CTRD /PHTS Coordinator Symposium April 9, 2008

CTRD /PHTS Coordinator Symposium

April 9, 2008Harvard Conference Center

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Quiz

Please find a quiz in your notebook. These will be collected and scored in 15 minutes.

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CTRD /PHTS Coordinator SymposiumApril 9, 2008

10:00 am – 12:30 pm9:30 Check In

10:00 Welcome David C. Naftel, PhD

10:10 The Contribution of PHTS to Pediatric Heart TransplantationElizabeth

Blume, MD

10:30 The Contribution of CTRD to Adult Heart Transplantation David O. Taylor,

MD

10:50 Predicting Major Events David C. Naftel, PhD

11:20 Compliance Post Transplant Connie White-Williams, MSN

11:30 It’s all about the data!Quality Control Rebekah Burder

Nicole Kirklin

Data Reports Margaret Foushee Susan Myers

11:45 You’re in Control!: Table Sessions

12:15 Coordinator Recognition

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10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




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Wednesday, April 9, 200810:00 am CTRD/PHTS Coordinators Meeting6:00 pm PHTS Principal Investigators Meeting

Thursday, April 10, 20082:15 pm Impact of Interaction of Donor Characteristics on Post-Transplant Survival. A

Multi-Institutional Analysis, Dr. Josef Stehlik (CTRD)

Friday, April 11, 200812:00 pm Genotypic Variation and Phenotypic Characterization of Granzyme B Gene

Polymorphisms , Dr. Girnita (SCCOR / PHTS)12:40 pm Outcome of Children with Restrictive Cardiomyopathy Listed for Heart

Transplant, Dr. Zangwill (PHTS)2:30 pm Infection and Rejection Risk Using Induction with Interleukin II Receptor

Blockers v. Antithymocyte Globulin vs. No Induction, Dr. Pamboukian (CTRD)5:45 pm Dilated Cardiomyopathy and Listing for Heart Transplantation, Dr. Kirk

(PHTS)Serum Creatinine is a Limited Indicator of Renal Function in Pediatric Heart Transplantation, Dr. Feingold (PHTS)

Saturday, April 12, 200810:30am Pediatric Heart Transplantation: 14 Years of Improving Results Illustrated

by Patient Specific Predictions, Dr. Naftel (PHTS)10:45am Outcomes of Pediatric Patients with Hypertrophic Cardiomyopathy Listed

for Transplant, Dr. Gajarski (PHTS)11:45am The Impact of High-Risk Criteria on Mortality Following Heart

Transplantation in Children, Dr. Davies (PHTS, Astellas Young Investigator Award)

PHTS / CTRD Activities at ISHLT 2008

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Purpose of Coordinator Symposium

The overall purpose of this meeting is to improve patient outcomes by collecting high quality data and conducting high quality analyses based on this data.

We will accomplish this by: •Providing each coordinator with a detailed report that will include a summary of data received and statistical summaries to assist them with the IRB process.•Provide an opportunity to learn from other coordinators by sharing information and knowledge.•Providing answers to questions the coordinator may have about data entry and submission.•Thanking each coordinator for their hard work.

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PHTS Purpose (established 1993)

The purposes of the group are to establish and maintain an international, prospective, event driven database for heart transplantation, to use the database to encourage and stimulate basic and clinical research in the field of pediatric heart transplantation and to promote new therapeutic strategies.

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1. Scientific Research

Provide analysis of a large ongoing combined experience focusing on time-related outcomes (such as death, re-transplant, rejection, and infection) after transplantation and identification of associated risk factors.

2. Institution Results

Provide summaries, evaluation, and comparisons to participating institutions.

3. Future Studies

Provide the framework for data collection, entry, and analysis for prospective multi-institutional studies.

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CTRD Purpose (established 1990)

Standard Operating Procedure for a Research Study

The following is a suggested schedule for research projects:

1. Proposal Submission February

2. Review of Proposal March

3. Acceptance of Proposal April

4. Detailed Plan of Work May

5. Lead Investigator to UAB (optional) June

6. Analysis of data July or August

7. Abstract generation August 31

8. Abstract review by co-authors September 15

9. Abstract Submission September 20

10. Manuscript April (prior to ISHLT)

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Standard Operating Procedure for a Research Study

ManuscriptThe lead investigator is responsible for generating the manuscript. Under the precise direction of the lead investigator, the CTRD DCC will produce the “journal ready” figures and tables. The lead investigator is responsible for circulating the manuscript to co-authors and to the Research Committee. Ideally, the manuscript would be submitted to a journal at the same time of the ISHLT presentation (some scientific societies require this). The CTRD leadership strongly recommends that the manuscript be submitted at the time of presentation or very soon thereafter.

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UAB PHTS and CTRD Personnel David Naftel, Program Director and StatisticianNicole Kirklin, Program Manager for CTRDRebekah Burder, Program Manager for PHTSMargaret Foushee, Programmer and StatisticianSusan Myers, Programmer and StatisticianRob Brown, Programmer and StatisticianAimee Rountree, Data EntryTonya Rainey, Data EntrySainath Kamath, Data EntryChase Lenderman, Data Entry

St. Louis PersonnelCharlie Canter, Program DirectorKen Schechtman, StatisticianJie Zheng, Statistician

DCC Personnel

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10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




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Pediatric Heart Transplant StudyParticipating Centers – April, 2008 (33 Sites)

Arkansas Children’s Hospital

Boston Children’s Hospital

The Cleveland Clinic Foundation

Children’s Hospital Medical Center

Nationwide Children’s Center

Cardinal Glennon Children’s Medical Center

Children’s Hospital of Michigan

Children’s Hospital of Pittsburgh

Children’s Hospital of Wisconsin

Children’s Memorial Hospital

Univ. of Texas, Children’s Medical Center

Children’s Hospital of Philadelphia

Columbia University Babies Hospital

Children’s Healthcare of Atlanta at Egleston

Freeman Hospital, Newcastle upon Tyne

University of Florida, Shands Hospital

Hospital for Sick Children

Indiana University Medical Center

Johns Hopkins Hospital

University of Miami, Jackson Memorial Hospital

Loma Linda University Medical Center

Univ. of Michigan, CS Mott Children’s Hospital

Primary Children’s Medical Center

Seattle Children’s Medical Center

St. Louis Children’s Hospital

Stanford University Medical Center

University of Alabama at Birmingham

University of California, Los Angeles

Univ. of Colorado, The Children’s Hospital

University of Iowa Hospitals and Clinics

University of North Carolina

University of Alberta

Univ. of South Florida: All Children’s Hospital

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The Impact of High Risk Criteria on Mortality Following Heart Transplantation in Children Dr. Ryan Davies

Pediatric Heart Transplantation: 14 Years of Improving Results Illustrated by Patient Specific Predictions Dr. David Naftel

Serum Creatinine is a Limited Indicator of Renal Function in Pediatric Heart Transplantation Dr. Brian Feingold

Outcomes of Pediatric Patients with Hypertrophic Cardiomyopathy Listed for Transplant Dr. Robert Gajarski

Dilated Cardiomyopathy and Listing for Heart Transplantation Dr. Richard Kirk

Outcomes of Children with Restrictive Cardiomyopathy Listed for Heart Transplant Dr. Steve Zangwill

PHTS Abstracts, ISHLT 2008

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Betsy Blume – President

Anne Dipchand – Vice President

Elfriede Pahl – Secretary Treasurer

Karen Uzark– Non Physician Representative

Daphne Hsu – Past President

Robert Spicer – Member at Large

Erik Edens – Member at Large

Steve Zangwill – Member at Large

PHTS Steering Committee, 2008-2009

Responsibilities of the Steering Committee include:Supervision of research efforts and use of the database Organization of biannual meetingsQuarterly conference call meetings of the Steering Committee membersFinancial oversight regarding dues, educational and research grants, etc.Solicitation, management, and allocation of funds for research and educational support 1) Unrestricted funds are allocated by Steering Committee

2) Grant funds for a specific project are administered by that project’s Principal Investigator If grant is to PHTSG, Steering Committee administers research funds

Lobby for increased awareness of pediatric heart transplantation15

Betsy Blume (Chair)

Anne Dipchand

Elfriede Pahl

Karen Uzark

Daphne Hsu

Robert Spicer

Erik Edens

Steve Zangwill

David Naftel

PHTS Scientific Committee, 2008-2009

Scientific committee is responsible for:a. Reviewing research proposals b. Determining suitability of studies to be performedc. Interfacing with UAB regarding timing and support available for studiesd. Providing advice and guidance to the investigatore. Ensuring that the roles of investigator and co-investigators are clarified prior to initiation of studyf. Providing oversight regarding data analysis and presentationg. Ensuring timely publication of the data 16

PHTS Scientific Committee

Proposals may be submitted by:MembersNon members with a sponsoring memberUniversity of Alabama at Birmingham

Proposals should includeDescription of studyExpected involvement of investigator, proposed co-investigatorsTime-line of study completion

Request for new PHTS projects and Non-PHTS will be reviewed by the Scientific Committee twice each year. The deadlines for submission of new projects are January 1st and June 1st.

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Anne Dipchand (Chair)

Erik Edens

Kirk Kanter

Charlie Canter

Bob Gajarski

Steve Zangwill

Kathy Ainley

PHTS Database Committee, 2008-2009

Database committee is responsible for:a. Facilitating data collection and analysisb. Ensuring the quality of the datac. Modifying database as data evolves

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Elfie Pahl (Chair)

Juan Alejos

Richard Chinnock

Debbie Murphy

PHTS Finance Committee, 2008-2009

Finance committee is responsible for:a. Approval of funds to be received and disbursed.b. Providing budgetary oversight of studies performed by the PHTSG.c. Supervision of efforts to receive funds to support the activities of PHTSG.

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All pediatric patients under 18 years of age listed for primary heart transplantation are included in the study.

The only exclusions are:1. Patients who are greater than 18 years of age at the time of

listing.2. Patients who are transplanted at an institution but the institution

provides no care after discharge and is not involved in the medical followup of the patient. This must be a planned circumstance and is related to rules imposed by an insurance provider. This is a rare occurrence and should be discussed with the PHTS center.

3. Patients that in combination with their primary heart transplant also receive another organ (e.g. lung or kidney)

PHTS Inclusion/Exclusion Criteria (MOO, page 5)

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Pediatric Heart Transplant StudyPediatric Monograph

Chapter 1: HEART DISEASE LEADING TO PEDIATRIC HEART TRANSPLANTATION: CARDIOMYOPATHIES AND CONGENITAL HEART DISEASE. Lamour, Hsu, Canter

Chapter 2: RECIPIENT EVALUATION: MEDICAL AND PSYCHOSOCIAL MORBIDITIES. Pearce, Gajarski

Chapter 3: MANAGEMENT OF PATIENTS AWAITING TRANSPLANTATION: MEDICAL, IMMUNOLOGIC AND MECHANICAL SUPPORT. Burch, Duncan, Kirklin.

Chapter 4: SPECIAL IMMUNOLOGIC ISSUES IN PEDIATRIC HEART TRANSPLANTATION. West, Shaddy, Balfour.

Chapter 5: THE PEDIATRIC HEART DONOR: EVALUATION OF AGE, SIZE, CAUSE OF DEATH, DONOR HEART FUNCTION AND VITALITY. Bernstein, Parisi.

Chapter 6: SURGICAL TECHNIQUES IN PEDIATRIC HEART TRANSPLANTATION . Del Nido, Bailey, Kirklin

Chapter 7: POST-OPERATIVE MANAGEMENT: EARLY GRAFT FAILURE, PULMONARY HYPERTENSION, AND INITIAL IMMUNOSUPPRESSION STRATEGIES. Huddleston, Alejos

Chapter 8: SURVIVAL AFTER PEDIATRIC HEART TRANSPLANTATIONMorrow, Kirklin

Chapter 9: ACUTE REJECTION: NATURAL HISTORY, RISK FACTORS, SURV EILLANCE, AND TREATMENT. Dodd, Cabo, Dipchand

Chapter 10: INFECTION FOLLOWING PEDIATRIC HEART TRANSPLANTATION. Schowengerdt, Azeka

Chapter 11: ALLOGRAFT VASCULOPATHY: DETECTION, RISK FACTORS, NATURAL HISTORY AND TREATMENT. Pahl, Caforio, Kuhn.

Chapter 12: POST-TRANSPLANT MALIGNANCY: RISK FACTORS, INCIDENCE, DIAGNOSIS, TREATMENT. Addonizio, Boyle.

Chapter 13: CHILD DEVELOPMENT POST-TRANSPLANT: GROWTH, INTELLECTUAL/DEVELOPMENTAL FUNCTIONING, AND PSYCHOSOCIAL FUNCTIONING. Radley-Smith, Wray, Chinnock, Uzark,

Chapter 14: LONG-TERM MEDICAL MORBIDITIES. Singh.

Chapter 15: RETRANSPLANTATION. Mahle, Chin 21

Pediatric Heart Transplant StudyPediatric Mechanical Circulatory Support

Outcomes of Children Bridged to Heart Transplantation with Ventricular Assist Devices: A Multi-Institutional Study

Elizabeth Blume, David Naftel, Heather Bastardi, Brian Duncan, James Kirklin, Steve Webber. Circulation 2006;113:2313-2319

PHTS: 22 Articles with 284 Citations (through Dec. 2007)• Outcome of listing for heart transplantation in infants younger than

six months: Predictors of death and interval to transplantation

Dr. Robert Morrow (41 citations, published 1997) • Survival and risk factors for death after cardiac transplantation in

infants – A multi-institutional study

Dr. Charles Canter (33 citations, published 1997)• Predicting Outcomes after listing for heart transplantation in

children: Comparison of Kaplan-Meier and parametric competing risk analysis

Dr. David McGiffin (29 citations, published 1995)• Outcomes of Children Bridged to Heart Transplantation with

Ventricular Assist Devices: A Multi-Institutional Study

Dr. Elizabeth Blume (15 citations, published 2006)

a

Impact of PHTS Research on Heart Transplant Community

Impact of PHTS Research on Heart Transplant Clinical Practices

Survival Improvement

What has PHTS contributed?

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Rejection Improvement


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Infection Improvement


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Coronary Artery Disease Improvement


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Malignancy Improvement


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Listing Practices


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Dr. Robert JaquissECMO as a Bridge to Transplant: Outcomes of Listed

Children Dr. Kristine GulesarianOutcomes Following Listing and Transplantation for Neonates with Unoperated Non-HLHS Congenital Heart DiseaseDr. Sujata Chakravarti

Sudden Death following Pediatric Heart Transplantation

PHTS Upcoming Abstracts, Fall 2008

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PHTS (1993-2008)

Topic Presentations Publications

Survival 25 14

Causes of Death 2 0

Rejection 8 4

Infection 6 2

Malignancy 1 1

CAD 2 1

VAD 1 1

Other 3 0

Total (Actual) 47 22


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Presentations (1993-2008)

Society N % of 47

ISHLT 37 79%

AHA 4 8%

ACC 2 4%

World Pediatric 2 4%

Other 2 4%

Total (Actual) 47 100%


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Publications (1993-2008)

Journal N % of 22

JHLT 15 68%

Circulation 4 18%

Progress in Pediatric Cardiology

1 5%

Lancet 1 5%

Congenital Heart Disease 1 5%

Total 22 100%

PHTS Studies that require additional data collection

SCCORSCCOR is a genetics study organized by Dr. Webber at the University of Pittsburgh. The purpose is to study whether genetic make up may influence a patient’s outcome after transplantation.

Dr. Webber will be speaking at the PHTS Principal Investigators Meeting tonight at 6:00pm.

PCMRThe PCMR Project is a data merge with the Pediatric Cardiomyopathy Foundation at NERI. The purpose of the study is to study the course of cardiomyopathy from the time of diagnosis to transplantation. We have completed the first data merge, published three abstracts and are beginning analyses on two more manuscripts.Renal FunctionRecently, the coordinators were asked to complete an extra data form on renal function post transplant. The purpose was to determine how many PHTS transplants have had renal dysfunction post heart transplant.

The results of this study are being presented Friday at 5:45 pm by Dr. Brian Feingold.

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10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




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Infection and Rejection Risk Using Induction with Interleukin II Receptor Blockers vs. Anthithymocyte Globulin vs. No Induction: A Multi-Institutional Study Dr. Salpy Pamboukian

Impact of Interaction of Donor Characteristics on Post-Transplant Survival. A Multi-Institutional Analysis Dr. Josef Stehlik

CTRD Abstracts, ISHLT 2008

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David O. Taylor, MD President

Howard Eisen, MD Vice President/Secretary

Josef Stehlik, MD Treasurer

James K. Kirklin, MD Member at Large

Additional UAB Voting Member

Adrian VanBakel, MD Member at Large

John Herre, MD Member at Large

David C. Naftel, PhD Additional UAB Voting Member

Mary Beth Hagan, MSN Non-Physician Member

CTRD Steering Committee (2007 - 2008)

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David O. Taylor, MD Committee Chair

Keith Aaronson, MD

David Feldman, MD

Marc Semigran, MD

Stuart Russell, MD

Research Committee is responsible for:

• Reviewing research proposals

• Determining suitability of studies to be performed

• Interfacing with UAB regarding timing and support available for studies

• Providing advice and guidance to the investigator

• Ensuring that the roles of investigator and co-investigator are clarified prior to initiation of study

• Providing oversight regarding data analysis and presentation

• Ensuring timely publication of the data

CTRD Research Committee (2007 – 2008)

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Howard Eisen, MD Committee Chair

David C. Naftel, PhD

Gregory Ewald, MD

Adrian VanBakel, MD

Mary Beth Hagan, MSN

Database Committee is responsible for:

• Modifying database as data evolves

• Facilitating data collection and analyses

• Ensuring the quality of the data

CTRD Database Committee (2007 – 2008)

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Josef Stehlik, MD Committee Chair

Neil Lewis, MD

Si M. Pham, MD

Guillermo Torre, MD

Patricia Chang, MD

Finance Committee is responsible for:

• Approval of funds to be received and disbursed

• Establishment of guidelines for expenses related to approved studies

• Provision of budgetary oversight of studies performed by the CTRD

• Supervision of efforts to receive funds to support the activities of CTRD

CTRD Finance Committee (2007 – 2008)

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CTRD Timeline

19901993

2005

CTRD Begins

1 st Form

Revision

1 st Paper is

Published

2007

3 rd Form

Revision

4 th Form

Revision

2008

…

1999

2 nd Form

Revision

19961993

TCRD

officially

changed

to CTRD*

24 th Publication

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CTRD Inclusion Criteria:

• Patients undergoing heart transplantation (with or without other simultaneous organ transplant)

• Patients 18 years of age or older at the time of transplant

• Patients undergoing re-transplantation if primary transplant occurred at your institution after your institution joined CTRD

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CTRD Exclusion Criteria:• Patients under the age of 18 at time of transplant.• Patients undergoing re-transplantation if any of the

previous transplants occurred at another institution (even if transplants occurred at another CTRD institution).

Termination of Follow up:• Any patient who has “transferred care” to another

institution and “come back” to your institution. Once they leave CTRD, they cannot be followed any longer.

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Cardiac Transplant Research DatabaseParticipating Centers

Abbott Northwestern HospitalCleveland Clinic FoundationDownstate Heart Transplant CenterHenry Ford HospitalHershey Medical CenterJohns Hopkins HospitalJackson Memorial HospitalLoyola University Medical CenterMid-America Heart Institute Medical College of VirginiaMassachusetts General HospitalMayo ClinicOhio State UniversityRush-Presbyterian Hospital

Medical University of South CarolinaSharp Memorial HospitalSt. Luke’s Episcopal HospitalSentara Norfolk General HospitalBaylor College of MedicineTemple University HospitalUniversity of Alabama at BirminghamUniversity of Cincinnati Medical CenterUniversity of Iowa Hospitals and ClinicsUniversity of Michigan Medical CenterUniversity of North Carolina at Chapel HillUtah Transplant Affiliated HospitalsUT Southwestern/St. Paul Medical CenterVA Medical Center, Richmond VAWashington University Center

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Impact of CTRD Research on Heart Transplant Community

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CTRD (1990 – 2008)

Topic Presentations Publications

Survival 28 16

Causes of Death 4 1

Donor 4 2

Rejection 10 5

Infection 7 3

Malignancy 3 0

CAD 4 1

Other 12 3

Total (Actual) 62 22


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Presentations (1990 – 2008)

Society N % of 62

ISHLT 54 87%

AHA 4 6%

ACC 2 3%

Other 1 2%



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Publications (1990 – 2008)

Journal N % of 22

JHLT 19 86%

Circulation 1 5%

Current Opinion in Cardiology

1 5%

JTCVS 1 5%


CTRD: 22 Articles with 922 Citations (through Dec. 2007)• Pre-transplantation Risk Factors for Death After

Cardiac Transplantation: A Multi-Institutional Study, Dr. RC Bourge (176 citations, published 1993)

• Heart Transplant Coronary Artery Disease Detected by Coronary Angiography: A Multi-Institutional Study of Preoperative Donor and Recipient Risk Factors, Dr. MR Costanzo (172 citations, published 1998)

• Pre-transplantation Risk Factors for Acute Rejection after Heart Transplantation: A Multi-Institutional Study, Dr. JA Kobashigawa (66 citations, published 1993)


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Impact of CTRD Research on Heart Transplant Clinical Practices

Survival Improvement

What has CTRD contributed?

49


Rejection Improvement


50


Infection Improvement


51


Coronary Artery Disease Improvement


52


Malignancy Improvement


53


Listing Practices


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10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




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Pediatric Heart Transplantation: 14 Years of Improving Results Illustrated by Patient Specific Predictions

David C Naftel, James K Kirklin, Daphne T Hsu, Elizabeth D Blume, Steve A Webber, William R Morrow, and Charles E Canter.

Predicting Major Events

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Purpose: A key issue in pediatric heart transplantation is whether results have improved with time. Assessment of the degree of improvement in pts with specific characteristics can estimate the era effect and produce patient specific survival predictions.


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Methods and Materials: The Pediatric Heart Transplant Study began in 1993. Currently 30 sites submit data on transplanted patients. Parametric methods that model phases of risk and incorporate risk factors were used to analyze survival. The resultant hazard function and risk factor co-efficients were used to produce survival predictions according to specific risk factors. The effect of transplant date was explicitly modeled.


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Results: Between 1993 and 2006, 2238 transplant patients were entered. Major risk factors for the early phase of risk were younger age (p=.02), female (p=.008), congenital heart disease (p<.001), any combination (p<.001) of VAD, IABP, ventilator and ECMO; for the constant phase of risk were older age (p<.001), African American (p<.001), previous sternotomy (p=.003), and recipient/donor gender mismatch (p=.02). Earlier year of transplant was a risk factor in both phases of risk (early: p=.002, constant: p=.03). The figure illustrates the predicted survival in 2 white male pts with male donors and no previous sternotomies: Patient A (13 yrs old) with non-congenital diagnosis. Patient B (1 yr) with congenital diagnosis. The predicted survival for these 2 patients if transplant in 1993 vs 2001 is illustrated. The difference in the two curves is an estimate of the improvement during this time frame.


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Conclusions: Pediatric heart transplantation continues to have improving results. Multivariable models can be used to predict survival for a specific patient. The predictions can also be used to portray the effect of date of operation.


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10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




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CTRD Follow up Forms: Compliance Section

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Year of Followup

Followed, Alive

Followed, Dead

Not Followed, Dead

Transferred Not Followed, Alive

Total

2005 2354 53 65 11 266 (10%) 2749

2006 1866 54 63 3 565 (22%) 2551

2007 996 28 46 4 1345 (56%) 2419

Total

CTRD; 1996-2005; Compliance

This table is a summary of the followup forms in the years 2005-2007 for patients transplanted between 1/1/1996 & 12/31/2004.


The following compliance data is summarized for patients who were followed in 2005. The following tables summarized 4 of the measures of compliance on the follow up form. The measures of compliance on form 8 are:

1. Immunosuppressive Medications2. Other Medications3. Clinic Visits4. Scheduled labs5. Diet / Weight Control6. Exercise7. Smoking cessation8. Self Monitoring / Calls when experiencing problem9. Other

Measures of Compliance

Year of Followup

Clinic Visits Immunosuppression Self-Monitoring Smoking

2005 C 2190 (91%)

NC 113 (5%)

NA 104 (4%)

C 2255 (94%)

NC 52 (2.2%)

NA 100 (4%)

C 2218 (92%)

NC 71 (3%)

NA 118 (5%)

C 2178 (90%)

NC 91 (3.8%)

NA 138 (5.7%)

2006 C 1769 (92%)

NC 123 (6%)

NA 28 (1%)

C 1839 (96%)

NC 50 (2.6%)

NA 31 (1.6%)

C 1806 (94%)

NC 71 (3.7%)

NA 43 (2.2%)

C 1788 (93%)

NC 84 (4.4%)

NA 48 (2.5%)

2007 C 944 (92%)

NC 67 (7%)

NA 13 (1%)

C 986 (96%)

NC 24 (2.3%)

NA 14 (1.4%)

C 967 (94%)

NC 39 (3.8%)

NA 18 (1.8%)

C 954 (93%)

NC 49 (4.8%)

NA 21 (2.0%)

C = CompliantNC = Non-compliantNA = Not AnsweredPercentages are among patients who were followed


50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36

Per

cen

t S

urv

ival

Months After 2005 Annual Followup


N=2390

2 year survival: 92%

All actuarials are based on an annual 2005 followup being in the dataset (3 & 6 month followups were not used). Time “0” is the date of the 2005 followup form.


The % survival at 2 Years for compliant patients is 92%.

The % survival at 2 years for patients that are non-compliant in taking immunosuppressive medications is:

A. 90%

B. 80%

C. 76%

D. 60%



The % survival at 2 years for patients that are non-compliant in taking immunosuppressive medications is:

A. 90%

B. 80%

C. 76%

D. 60%

50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36


Compliant (n=2226)

Non-Compliant (n=51)

Per

cen

t S

urv

ival


ImmunosuppressionP=.0001RR=3.15




The % survival at 2 years for patients that are non-compliant in coming to clinic is:

A. 90%

B. 80%

C. 76%

D. 60%



The % survival at 2 years for patients that are non-compliant in coming to clinic is:

A. 90%

B. 80%

C. 76%

D. 60%

50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36


Compliant (n=2168)


Per

cen

t S

urv

ival


Clinic VisitsP<.0001RR=2.9




The % survival at 2 years for patients that are non-compliant in diet and weight control is:

A. 90%

B. 80%

C. 76%

D. 60%



The % survival at 2 years for patients that are non-compliant in diet and weight control is:

A. 90%

B. 80%

C. 76%

D. 60%

50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36


Compliant

Non-Compliant

Per

cen

t S

urv

ival


Diet / Weight ControlP=.4RR=1.2




The % survival at 2 years for patients that are non-compliant in exercise is:

A. 90%

B. 80%

C. 76%

D. 60%



The % survival at 2 years for patients that are non-compliant in exercise is:

A. 90%

B. 80%

C. 76%

D. 60%

50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36


Compliant(n=1800)


Per

cen

t S

urv

ival


ExerciseP=.4RR=1.2




The % survival at 2 years for patients that are non-compliant in labs is:

A. 86%

B. 83%

C. 77%

D. 55%



The % survival at 2 years for patients that are non-compliant in labs is:

A. 86%

B. 83%

C. 77%

D. 55%

50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36


Compliant (n=2155)


Per

cen

t S

urv

ival


LabsP=.04RR=1.7




The % survival at 2 years for patients that are non-compliant in taking other medications is:

A. 88%

B. 80%

C. 72%

D. 57%



The % survival at 2 years for patients that are non-compliant in taking other medications is:

A. 88%

B. 80%

C. 72%

D. 57%

50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36


Compliant

Non-Compliant

Per

cen

t S

urv

ival


Other MedicationsP<.0001RR=2.6




The % survival at 2 years for patients that are non-compliant in smoking cessation is:

A. 89%

B. 82%

C. 75%

D. 60%



The % survival at 2 years for patients that are non-compliant in smoking cessation is:

A. 89%

B. 82%

C. 75%

D. 60%

50

55

60

65

70

75

80

85

90

95

100

0 6 12 18 24 30 36


Compliant (n=2151)


Per

cen

t S

urv

ival


SmokingP=.0007RR=2.3




The % survival at 2 years for patients that are non-compliant in self monitoring is:

A. 86%

B. 83%

C. 77%

D. 55%



The % survival at 2 years for patients that are non-compliant in self monitoring is:

A. 86%

B. 83%

C. 77%

D. 55%

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0 6 12 18 24 30 36


Compliant (n=2193)


Per

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Self MonitoringP<.0001RR = 3.2


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Compliant (n=1963)


Per

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In Any Area Except Diet, Weight Control, & Exercise

P<.0001RR = 2.2


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Compliant in all areas (n=1963)

≥ 3 Areas of NC (n=55)

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Excludes Compliance in Diet, Weight Control, and Exercise

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NC ISM & Clinic Visits

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Data issues:It is very important that the followup forms be completed prospectively. Bias will almost certainly result in a retrospective completion of compliance questions, especially if the patient has experienced morbid events or death before the form is completed. The coordinator should make a decision about issues of compliance based on careful questioning of the patient, by actions (or lack of actions) taken by the patient, or by laboratory data (trough levels, nicotine levels, etc.). The question of compliance should never be decided based on an outcome event (i.e. a rejection).

CTRD/PHTS Coordinator Study

Purpose of Study

96

CTRD/PHTS Coordinator Study

Process to make this happen

97


10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




98

PHTS Timeline

1993 1996 2005

PHTS Begins

First Form Revision

First Paper is

Published

2006

7 PHTS Papers are Published

SecondForm

Revision

Third Form

Revision

2008-2009

…

1999

Webber2004-2005

Hsu2006-2007

Blume2008-2010

Morrow1993-2001

Canter2002-2003

99

Possibilities for 2008 and 2009:Move towards electronic entryMake PHTS a non-profitMinor form revisions

Possibilities for 2008 and 2009:Move towards electronic entryMake PHTS a non-profitMinor form revisions

PHTS 2008 Activities

100

First quarter conference calls: ISHTL Abstracts (7)Scientific (2)Dipchand (1)Steering (2)Finance (1)Database (1)

Pediatric Heart Transplant StudyWebsite

http://www.uab.edu/ctsresearch/phts

BylawsFormsForm ManualCalendarMembership ListStudy Request FormsPublicationsAbstracts

BylawsFormsForm ManualCalendarMembership ListStudy Request FormsPublicationsAbstracts

101

All pediatric patients under 18 years of age listed for primary heart transplantation are included in the study.

The only exclusions are:1. Patients who are greater than 18 years of age at the time of

listing.2. Patients who are transplanted at an institution but the

institution provides no care after discharge and is not involved in the medical followup of the patient. This must be a planned circumstance and is related to rules imposed by an insurance provider. This is a rare occurrence and should be discussed with the PHTS center.

3. Patients that in combination with their primary heart transplant also receive another organ (e.g. lung or kidney)

PHTS Inclusion/Exclusion Criteria (MOO, page 5)

102

1st Quarter: January, February, MarchDue: April 30th

2nd Quarter: April, May, JuneDue: July 31st

3rd Quarter: July, August, SeptemberDue: October 31st

4th Quarter: October, November, DecemberDue: January 31st

PHTS Data Collection Schedule (MOO, page 4)

103

PHTS Forms:

Form # Name When to Submit

1 Patient Listing Immediately after listing

1t Patient Transplant Immediately after transplant

2 Donor Immediately after transplant

3 Immunosuppression Submit at discharge

4 CAD and LV Function Assessment Immediately after the event

5 Rejection Immediately after the event

6 Infection Immediately after the event

7 Malignancy/Lymphoproliferative Immediately after the event

8 Status Report Immediately after clinic visit

9 Coronary Revascularization Immediately after the event

10 Death Immediately after the event

11 Re-transplant Immediately after the event

104

What do I submit on a listed patient?Form 1 (Listing) Only filled out once in patient lifetimeForm 12 (Annual Followup)Form 10 (Death)You do NOT need to send in any other forms until patient is transplanted.

What do I submit when a patient is retransplanted?Form 11 (Retransplant)Form 1t (Transplant)Form 2 (Donor)Form 3 (Immunosuppression)Any other events and follow up as needed.

PHTS Listed Patients

105

CTRD Timeline

19901993

2005

CTRD Begins

1 st Form

Revision

1 st Paper is

Published

2007

3 rd Form

Revision

4 th Form

Revision

2008

…

1999

2 nd Form

Revision

19961993

TCRD

officially

changed

to CTRD*

24 th Publication

106

CTRD Websitewww.uab.edu/ctsresearch/ctrd

Username: coordinator Password: teige240

107

http://www.uab.edu/ctsresearch/ctrd

CTRD Website: Forms Pagewww.uab.edu/ctsresearch/ctrd

Username: coordinator Password: teige240

108

http://www.uab.edu/ctsresearch/ctrd

CTRD Data Collection Schedule:

Quarter Months Forms Due

1st January

February

March

April 30th

2nd April

May

June

July 31st

3rd July

August

September

October 31st

4th October

November

December

January 31st

109

CTRD Inclusion Criteria:

• Patients undergoing heart transplantation (with or without other simultaneous organ transplant)

• Patients 18 years of age or older at the time of transplant

• Patients undergoing re-transplantation if primary transplant occurred at your institution after your institution joined CTRD

110

CTRD Exclusion Criteria:• Patients under the age of 18 at time of transplant.• Patients undergoing re-transplantation if any of the

previous transplants occurred at another institution (even if transplants occurred at another CTRD institution).

Termination of Followup:• Any patient who has “transferred care” to another

institution and “come back” to your institution. Once they leave CTRD, they can not be followed any longer.

111

CTRD Forms:

Form # Name When to Submit

1 Initial Patient Entry (or re-transplant) Immediately after transplant

2 Donor Immediately after transplant

3 Immunosuppression and Hospital Discharge Submit at discharge

4 CAD and LV Function Assessment Immediately after the event

5 Rejection Immediately after the event

6 Infection Immediately after the event

7 Malignancy/Lymphoproliferative Disease Immediately after the event

8 Status Report (3, 6, 12, 24 month) Immediately after follow-up visit

9 Coronary Revascularization Immediately after the event

10 Death Immediately after the event

11 Re-transplant Immediately after the event

12 Status Report (annual after 2nd year) Immediately after annual follow-up visit

112

Form 1: Question number 4a, multi-organ transplant. Please be sure to send us all your heart transplants with additional simultaneous organ transplants (lung, liver, kidney, pancreas, other).

Form 3: Immunosuppression and Hospital Discharge. Always fill out Form 3.

Form 8 and 12: Follow up. Send in a follow up form, even if the patient misses their annual follow up. This lets us know that you haven’t forgotten the form. If a patient has transferred care to another institution, let us know. When an annual is missed determine if the patient just missed the appointment, has died or has transferred care. UNOS needs to know, so just let us know also.

CTRD Data: Data Issues and Questions

113

CTRD Form 1: Simultaneous Organ Transplant

114

CTRD Form 8 & 12: Patient Follow up

115

General Data Entry Issues:• Make sure that all forms submitted have vital information.

This means a complete id (institution code, patient number, re-transplant code, and patient initials).

• Checking Boxes in forms: When it says to check only one box on the form, please only check one box.

• Form Correction: If you send in a corrected form, please mark at the top of the form that this is a correction and circle the data you are correcting.

• Patient Consent: Please make sure that you consent your patients pre-transplant. This is extremely important.

CTRD Data: Data Issues and Questions

116

Years After Transplant

Per

cen

t S

urv

ival

CTRD; Jan 1990-Dec 2006

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0 1 2

After 1/1/2002

Before 1/1/2002

Each group contains 2 years of transplants before and then after the stated date.

Institutions not requiring consent for entry into CTRD

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0 1 2


Per

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After Consent

Before Consent

Each group contains 2 years of transplants before and then after initiationof consent policy for entry into CTRD

Institutions requiring consent for entry into CTRD

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Per

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Before Consent

Institution A


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Institution B


PHTS Mailing Address

Rebekah BurderPediatric Heart Transplant StudyUniversity of Alabama at BirminghamLHRB 790 – 1530 3rd Ave. SBirmingham, AL 35294-0007

CTRD Mailing AddressNicole KirklinCardiac Transplant Research DatabaseUniversity of Alabama at BirminghamLHRB 790 – 1530 3rd Ave. SBirmingham, AL 35294-0007

CTRD/PHTS Coordinators Symposium

121

For questions regarding CTRD form completion, please contact:

Nicole Kirklin, Program Manager

Office: 205-975-7810

Fax: 205-975-0085

Email: [email protected]

Connie White-Williams, RN, MSN

Office: 205-975-8611

Fax: 205-975-9792


Rob Brown, Data Manager

Office: 205-934-2553

Fax: 205-975-0085


mailto:[email protected]



For questions regarding PHTS form completion, please contact:

Rebekah Burder, Program Manager

Office: 205-975-0086

Fax: 205-975-0085


Margaret Foushee, Data Manager

Office: 205-996-5897

Fax: 205-975-0085


Rob Brown, Data Manager

Office: 205-934-2553

Fax: 205-975-0085





It’s All About the Data: Survey Responses

I have been a transplant coordinator for….

PHTS CTRD

Less than one year 3 (11%) 1 (7%)

One to five years 8 (29%) 1 (7%)

Five to ten years 8 (29%) 5 (33%)

More than ten years 8 (29%) 8 (53%)

I have been submitting data for….Less than one year 3 (11%) -

One to five years 11 (41%) 8 (50%)

Five to ten years 9 (33%) 6 (38%)

More than ten years 4 (15%) 2 (13%)

124


Typically, I find data by… PHTS CTRD

UNOS Database 1 (4%) -

Chart Review 14 (52%) 11 (69%)

Both 10 (37%) 4 (25%)

Institutional Database 2 (7%) 1 (6%)

I prefer….Electronic Entry 21 (78%) 12 (80%)

Paper Forms 5 (18%) 3 (20%)

Either 1 (4%) -

125

I fill out forms…

PHTS CTRD

as I see each patient 1 (4%) 2 (13%)

as each event happens 9 (34%) 4 (25%)

at the end of the quarter 8 (31%) 5 (31%)

at the end of the year 6 (23%) 2 (13%)

when I am able to 2 (8%) 3 (19%)

I spend….on data submission.Less than one hour per week 3 (13%) 2 (13%)

One hour per week 12 (52%) 5 (31%)

Two to five hours per week 6 (26%) 8 (50%)

More than five hours per week 1 (4%) 1 (6%)

3-4 days at the end of the year 1 (4%) -


126


I spend….on UNOS data submission. PHTS

CTRD

Less than one hour per week 4 (17%) -

One hour per week 8 (33%) 1 (6%)

Two to five hours per week 4 (17%) 6 (38%)

More than five hours per week 1 (4%) 2 (13%)

Quarterly 1 (4%) 2 (13%)

Annually - -

Not responsible for UNOS Data 6 (25%) 5 (31%)

127

It’s All About the Data: Survey Responses (PHTS)

How do you benefit from PHTS?

It helps me keep up with patients.

It keeps up my interest in transplant care.

Our data is more consistent because of PHTS.

The publications are interesting.

It is very educational.

I have access to support and knowledge of other coordinators.

There is no benefit.

128

It’s All About the Data: Survey Responses (CTRD)

How do you benefit from CTRD ?

Available pool of transplant data.It is an avenue to search data.I learn by reading abstracts/journal articles.Tracks data.Great networking opportunity.Available for query.Good place to keep and reference donor information for each recipient.Can pull data regarding our centers performance in comparison to others.Chart review helpful learning more about particular patients.Forms are quick access to data.The yearly forms are interesting.Unfortunately, we gain very little benefit.

129

It’s All About the Data: Survey Responses (PHTS)

How does your hospital benefit from PHTS?

It helped us build an institutional database.

We share information with other hospitals to increase quality of care.

It gives us access to up to date information and resources for patients.

It helps us evaluate our program.

It helps us track our trends.

It helps us with research.

It does not benefit. Projects are hung up in Alabama.

130

It’s All About the Data: Survey Responses (CTRD)

How does your hospital benefit from CTRD?

Helps for QM/PI initiatives and gives snapshot view of program.We feel this is the most respected database for transplant patients and

appreciate receiving benchmark data back.Available for query.Patient care is improved with the availability of CTRD data and provides a

useful tool for our center to review and use to make changes according to information results.

Source to compare data/outcomes.The PI authors/co-authors multiple abstracts.None that I can see. Never has used the information.Again, very little. The prestige only.

131


What PHTS changes would you like to see?I would like to see PHTS go electronic.

I would like to have more coordinator studies.

I would like better access to center-specific data.

I would like easier access to data queries.

I would like to meet more coordinators.

What CTRD changes would you like to see?I would like to see CTRD go electronic.

Take all the UNOS parameters off the CTRD forms as it is duplication.

I would like easier access to data queries.

132


Why won’t you be able to attend the meetings at ISHLT?We do not have the funding. 8

I typically go to AHA not ISHLT. 3

Travel? What travel? I’m chained to my desk! 6

Work schedule does not permit, not enough coordinators. 4

Hospital does not support coordinator travel 1

133

Organizing Data Collection

134

What does a great institution do?• Sends IRB approval notice before expiration date• Pays dues• Submits complete data• Has timely data submission• Has good response time to email• Asks questions when in doubt


135

What does a great DCC do?• Has good response time to email• Asks questions when in doubt• Keeps in contact with coordinators and principal

investigators• Completes analyses in a timely manner• Provides clear instructions for form completion via

manuals (with frequent revisions and updates) and form reviews.


136

Name: XXX Tx # Listed Date Transplant 1 Transplant 2 Delisted Relisted Expired TransferredPHTS ID Number

Smith, Jane Anne 1 1/2/2000 1/10/2000

XXX 0001 JAS

Smith, John Lee 2 2/1/2000 10/5/2000 1/1/2002

XXX 0002 JLS

Doe, Jane Smith 3 3/31/2000 12/31/2001 1/5/2001

XXX 0003 JSD

Doe, John Adam 20 5/15/2000

XXX 0004 JAD

We highly recommend using a spreadsheet to organize your patients on an institutional level. This will allow you to see who has been listed or transplanted by year and give you a way to obtain basic counts and verify data.


137

To be included in the final research database you must have:1. Current IRB2. Current Dues3. Complete Data

a. Listings (PHTS only)b. Transplants (reconciled with UNOS)c. Followup and Eventsd. Year End data received by March 1st

PHTS/CTRD Data Analyses: Who’s In?

138

What happens if I can’t submit my data by the deadline?

Call or email to let us know!!



What it takes to have analyzable data:1. Timely submission from institution(critical for the DCC to stay on track for deadline)2. Data are:a. Received and separated for entryb. Entered by form typec. Entered forms are printed dailyd. Forms are checked by two peoplee. Data entry (DCC) errors are correctedf. Data entry (Institutional) errors are collected and sent back quarterlyg. Quarterly corrections are received back from institution h. Corrections are entered i. Forms are filed


139


10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




140

Things We Might Have in Common

Margaret’s Thoughts:• Vacation is a good thing.• Pets are great company.• I would love to win the lottery!• If this presentation stays on schedule and

is easy to understand, it will be appreciated.

Things We Might NOT Have in Common

Margaret’s Thoughts:• Data are fun.

Dates of transplant: 01/01/1990 – 12/31/2006

Total number of transplants: 7352

Current # participating institutions: 27

CTRD: Jan 1990 – Dec 2006

142

Dates of listing and txpl: 01/01/1993 – 12/31/2007

Total number of listings: 3454*

Total number of transplants: 2452*

Current # participating institutions: 33

* Data entered and checked as of 04/01/2008

PHTS: Jan 1993 – Dec 2007*

To be included in the final research database you must have:1. Current IRB2. Current Dues3. Complete Data

a. Listings (PHTS only)b. Transplants (reconciled with UNOS)c. Follow-up and Eventsd. Year End data received by March 1st


143





• Work closely with coordinators to ensure timely and complete data submission

• Ensure timely and accurate data entry• Double check data entry in a timely manner• Work with coordinators to correct errors

found during this process• Check number of transplants reported by

institution against UNOS report

Building a Better Data Set

144

Steps for initial data entry and checking

Beyond a Better Data Set

• Initial data entry and double checking are completed in a timely manner

• Quality Improvement processes for overall data set are completed on a quarterly basis

• Timely feedback to coordinators is maintained

Data Quality Improvement

• Obvious problems– Missing values – Dates– Missing forms

• Not quite as obvious problems– (You, too, may come to love data)

– Common sense – Information collected two ways– Clinical relevance



• Not quite as obvious problems– Common sense – Information collected two ways– Clinical relevance

0.0

0.5

1.0

1.5

2.0

2.5

3.0

0 2 4 6 8 10 12 14 16 18

Age (yrs) at Listing

BS

A (

m2)

at L

isti

ng

Example 1: Common Sense

Age and Body Surface Area at Listing

PHTS: Jan 1993 - Dec 2007

Age (yrs) at Listing

BS

A (

m2)

at L

isti

ng

Example 1: Common Sense

Age and Body Surface Area at Listing


0.0

0.5

1.0

1.5

2.0

2.5

3.0

0 2 4 6 8 10 12 14 16 18




05

1015202530354045505560

0 5 10 15 20 25 30 35 40 45 50 55 60

Reported Donor Age (yrs)

Cal

cula

ted

Do

no

r A

ge

(yrs

)

Example 2: Data Collected Two WaysCalculated Donor Age vs Reported Donor Age


05

1015202530354045505560

0 5 10 15 20 25 30 35 40 45 50 55 60

Reported Donor Age (yrs)

Cal

cula

ted

Do

no

r A

ge

(yrs

)

Example 2: Data Collected Two Ways

Calculated Donor Age vs Reported Donor Age





0.0

0.5

1.0

1.5

2.0

2.5

3.0

0.0 0.5 1.0 1.5 2.0 2.5 3.0

Recipient BSA (m2)

Do

no

r B

SA

(m

2)

Example 3: Clinical RelevanceRecipient BSA vs Donor BSA


Recipient BSA (m2)

Do

no

r B

SA

(m

2)

Example 3: Clinical RelevanceRecipient BSA vs Donor BSA


0.0

0.5

1.0

1.5

2.0

2.5

3.0

0.0 0.5 1.0 1.5 2.0 2.5 3.0

PHTS Items in Your Packet

• Overall PHTS information – Listing and transplant totals for 2007* and since

inception– Demographic information for IRB submission

• Center-specific information– Patient-specific listings and transplants for 2007*– Lists of patients with missing or questionable

data (please return to the DCC)


CTRD Items in Your Packet

• Overall CTRD information – 2007 Annual Report

• Center-specific information– Comparison of your institution’s total reported

2007 transplants* and the UNOS reported total– Patient-specific transplants and follow-up from

the last data set. This DOES NOT include 2007 transplants.


Summary

• COORDINATOR’s timely submission of data impacts data QI process

• COORDINATOR’s timely corrections and clarifications impact quality of final data set

• While the DCC’s work is measured in part by the quality of the data, we recognize that the COORDINATOR is the real key to quality!

Things We Might Have in Common NOW

Data are (somewhat ?) fun.

AKA: This presentation about data was not nearly as painful as I thought it might be.


10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




160

You’re in Control! Table Sessions

Questions to Consider

1. Any ideas for a coordinator initiated study?

2. Are there any significant data we are not capturing?

3. How can the website be improved?

4. Suggestions for a better/closer working relationship between the DCC and Coordinators

161


10:00 am – 12:30 pm9:30 Check In



Blume, MD


MD




Nicole Kirklin




162

Coordinator Recognition: QuizWhat year were the PHTS / CTRD forms last updated?

CTRD 2005

PHTS 2005

CTRD and PHTS forms should be sent in ___.

Annually

Whenever I have them finished

Quarterly

Monthly

None of the above

What is the most important information you must put on each form (which is sometimes left blank)?

The patient ID which consists of; Institution code, patient number, patient initials

CTRD form 3 should be completed and mailed in __ days post transplant OR after hospital discharge.

30 days

What is CTRD / PHTS form 5 used for?

CTRD: Rejection

PHTS: Rejection

Which forms are used to track patient follow up?

CTRD: Form 8 (3, 6, 12, 24 months) and Form 12 (annual follow up > 2 yrs)

PHTS: Form 8 and Form 12

163

Coordinator Recognition: Quiz

True or False

CTRD / PHTS collect only primary heart transplants.

False, CTRD collects the following: heart and additional simultaneous organ transplant including lung, liver, kidney, other.

PHTS: True

True or False

CTRD does not collect multi organ transplants?

False; CTRD collects heart/liver, heart/kidney, heart/lung, heart/pancreas, heart/other

True or False

Coordinator meetings are mandatory for each CTRD / PHTS coordinator to attend

True

True or False

It is ok to leave off the sex of the patient.

False

What is question 7 of Form 8?

CTRD: Current maintenance Immunosuppression

PHTS: Medications

Tiebreaker:

How much was Paul McCartney ordered to pay Heather Mills in their recent divorce settlement?

48.6 Million164

The End

Take Home:

1. Fill out follow-up forms as they occur.

2. Call us if you have questions.

3. Our research is making a difference.

165

Health & Medicine

CTRD /PHTS Coordinator Symposium April 9, 2008