Parkinson s outcomes Project Report to the Community Outcomes... · Ultimately, the Parkinson’s Outcomes Project is a cycle of learning. Physicians and Physicians and therapists

Parkinson’s outcomes Project: Report to the Community

Find Answers. Change Lives. Beat Parkinson’s.

The Parkinson’s Outcomes Project

The mission of the Parkinson’s Outcomes Project is to determine

what works best in treatment and care with an aim toward

slowing the impact of the disease. At its heart is an all-inclusive,

international database that will follow patients over time.

Currently tracking more than 5,500 patients in four countries,

the Quality Improvement Initiative (QII) study will grow in the

coming years to follow tens of thousands of patients worldwide.

The Project will:

• Fund comparative research to determine best treatments and

why some people respond better to some therapies than others;

• Create transparency about what strategies produce the best

results and how specific centers measure up;

• Allow individuals to compare their health and treatments to

that of similar people; and

• Inform education and outreach efforts for both families

and professionals.

national Parkinson fou ndation 1

We now have the

deepest pool of

Parkinson’s data

ever collected. If

you have Parkinson’s,

there is almost

certainly someone

like you participating

in the study.

A little over three years ago, the National Parkinson Foundation (NPF) launched an

unprecedented research collaboration: the Quality Improvement Initiative (QII), part of

the Parkinson’s Outcomes Project. It is the largest clinical study of Parkinson’s disease ever

conducted, and the first with the primary goal of identifying and explaining factors that result

in longer, better, and more active lives for people with Parkinson’s.

The result is the deepest pool of Parkinson’s data ever collected, from some 5,500 people in four

countries. If you have Parkinson’s, there is almost certainly someone like you participating in

the study. Some are thriving; others are not doing as well. Our goal is to determine what makes

that difference. We can now consider the interplay of factors that produce different results in

different people, and likely paths toward better outcomes.

Unlike prior studies, this initiative encompasses the entire spectrum of Parkinson’s disease.

No one was too sick or too advanced, or too young or too old, to be included. More than 1,400

participants are now between 55 and 65 years old, the ages when most people are diagnosed. But

participants also include more than 440 with onset before age 40, and more than 100 with onset

after age 80, making it the largest prospective study of both young- and late-onset Parkinson’s

ever conducted.

Our study is equally inclusive in terms of the experience of individuals with Parkinson’s. More

than 650 participants manage at least two other serious illnesses—a group almost always

excluded from other clinical studies. Our data includes an assessment of medications and other

treatment, as well as motor symptoms, cognition, anxiety and depression, and caregiver burden.

To Our Parkinson’s Community:

2 nat ional Parkinson foundation

Mark Guttman, MD

This comprehensive evaluation reflects the complicated nature of Parkinson’s, which over time

can affect nearly every part of a person, as well as their loved ones.

Our study encompasses individuals at 20 leading centers for treating Parkinson’s, all part of

NPF’s Center of Excellence network. By studying the “best of the best,” NPF plans to delve into

the key differences in treatment and outcomes because every person with Parkinson’s deserves

“best practice” care, no matter where they are treated.

When we study how disease affects individuals, we talk about your “health status,” and much of

this report concerns the health status of people in our study. Health status is important because

it encompasses much more than just the disease. Our goal as physicians is to not just help you

function better, but to help you feel better. There is a difference between function and feeling,

and we have found that how people with Parkinson’s feel—their mood and depression—is a

critical factor with a tangible impact on overall health. We have also identified some of the steps

that we as doctors, and you as patients, can take to change this. These opportunities for all of us

to improve health are the highlight of this inaugural report.

We all hope that the next major breakthrough in Parkinson’s disease will be a treatment that

slows down biological progression. When we achieve this, optimizing care will be even more

important: though symptoms may be reduced, they must be addressed over a longer life

expectancy. We will still need to work together to prevent falls, treat depression, and address

John Nutt, MD


Eugene Nelson, DSc

John Nutt, MD

Director of the NPF Center of Excellence

Movement Disorders Center at Oregon

Health and Science University, Portland, OR

QII Study Co-Chair

Mark Guttman, MD


Center for Movement Disorders in

Markham Ontario, Toronto, Canada

QII Study Co-Chair

Tanya Simuni, MD


Parkinson’s Disease and Movement Disorders

Center at Northwestern University, Chicago, IL

QII Study Co-Chair

Eugene Nelson, DSc

Director of Quality Administration for the

Dartmouth-Hitchcock Medical Center

Lebanon, NH

QII Study Co-Chair

other factors that can speed the deterioration in your health status. As breakthroughs are

achieved, care will become more personalized, so that the best therapies are applied to your

particular genetic and environmental factors. In short: our goal is not only to optimize today’s

care, but to help guide tomorrow’s.

On behalf of NPF and our affiliated centers and institutions, we express our gratitude to those

who have shared our vision and supported our efforts. In particular, we thank the patients,

caregivers, clinicians, and researchers whose participation is steadily filling gaps in our

understanding, and supporting a brighter future in the fight against Parkinson’s. We look

forward to future reports to you, the Parkinson’s community, on our progress.

Tanya Simuni, MD


the Quality imProvement initiative: Who Participates?

NUMBER of paRticipaNts iN thE stUdyNumber of Patients in Study

37%Female 63%

Male

0

2000

4000

6000

8000

10000

7/1/

12

4/1/

12

1/1/

12

10/

1/11

7/1/

11

4/1/

11

1/1/

11

10/

1/10

7/1/

10

4/1/

10

1/1/

10

10/

1/09

7/1/

09

Cumulative Patients

Cumulative Visits

Since 2009, more

than 5,500 individuals

have joined the study,

representing more

than 9,000 clinic

visits.

The centerpiece of the Parkinson’s Outcome Project is the Quality Improvement

Initiative (QII) study. The study represents the broadest and most inclusive patient

demographics ever assembled in a clinical study of Parkinson’s disease.

By studying the most effective care across the full spectrum of patient age, gender,

age of onset and other variables, we seek to identify with ever-increasing precision

exactly which factors lead to better outcomes for all people with Parkinson’s.

This international study, which was started in 2009, includes participants from across

the United States as well as Canada, Israel and the Netherlands. Individuals with a

confirmed diagnosis of Parkinson’s disease are enrolled at each of the 20 participating

centers.


GENdERdisEasE sEvERity The severity of Parkinson’s disease

has long been assessed using a

5 point scale of mobility impairment.

On this Hoehn and Yahr scale, stages

one and two represent early disease,

three is mid stage, and stages four

and five are advanced Parkinson’s

where typically it is difficult to stand

unassisted.

Parkinson’s disease

is diagnosed more

commonly in men than

in women. Women in

the study are slightly

older and have slightly

more advanced

disease than men.

This study represents

a true cross-section

of people with

Parkinson’s disease,

with participants

ranging from 25 to 95

years old.

NUMBER of paRticipaNts By aGE

Disease Severity

58%Early

27%Mid

8%7%

Severe

Not Assesed GENDER

37%FEMALE

63%MALE

Number of Participants by Age Group

37%Female 63%

Male

0

100

200

300

400

500

99-100

97-98

95-96

93-94

91-92

89-90

87-88

85-86

83-84

81-82

79-80

77-78

75-76

73-74

71-72

69-70

67-68

65-66

63-64

61-62

59-60

57-58

55-56

53-54

51-52

49-50

47-48

45-46

43-44

41-42

39-40

37-38

35-36

33-34

31-32

29-30

27-28

25-26

23-24

21-22


The QII study includes data from the largest cohort of young-onset Parkinson’s of any

study to date. Already, differences are emerging in how younger people experience

Parkinson’s itself, and how they perceive the effectiveness of their care.

For example, we have identified that people with young-onset Parkinson’s often

progress slowly but feel their symptoms more intensely, perhaps because they are

aware of how their visible symptoms set them apart from their peers. In particular,

they typically assign a greater weight to the impact of decreased mobility on their

lives. Establishing such differences is a first step toward developing best practices for

treating individuals who develop Parkinson’s at an early age.

yoUNG-oNsEt paRkiNsoN’s disEasE This is the largest

clinical study to date

of people with young-

onset Parkinson’s.

Almost 400 people

with onset before

40 are providing

unprecedented insight

into this seldom-

studied group.

Young-Onset Parkinson’s

Age at Onset

37%Female 63%

Male

0

50

100

150

200

250

300

49-5

0

47-4

8

45-4

6

43-4

4

41-4

2

39-4

0

37-3

8

35-3

6

33-3

4

31-3

2

29-3

0

27-2

8

25-2

6

23-2

4

21-2

2

<20

NU

MB

ER O

F PA

RTI

CIPA

NTS


This study is also the first to include more than 350 subjects who have lived with

Parkinson’s for more than 20 years. These people tend to be doing better than

we would have predicted based on the trajectory of people with shorter-duration

disease. In particular, they tend to be more active and have better cognition. By

following these survivors and their care over time, we hope to learn what factors

have kept them in better health.

disEasE dURatioN Why do some people

continue to thrive,

in some cases, for

decades? Study

participants include

more than 350

people who have had

Parkinson’s for more

than 20 years.

Long-Duration Parkinson’s

0

100

200

300

400

50+454035302520151050

DISEASE DURATION

Maximum Duration

48 Years

YEARS


While the participants in our study are unusually diverse, they share one thing in

common: they all have received care at specialty clinics in academic medical centers

designated by NPF as Centers of Excellence. These centers are recognized leaders in

Parkinson’s care and meet rigorous criteria for research, care and outreach, evaluated

in a peer-review site visit.

The benefits of expert care are well established: those who see an expert neurologist

live longer, better lives than those who don’t. However, even specialized centers have

different approaches to care, and achieve different outcomes.

What, exactly, do various centers do differently? Measuring those differences is our

first goal. Are those differences the real reason for better outcomes? Testing those

explanations is our second goal. And finally, what is the best way to share these

findings with everyone who provides Parkinson’s care?

Ultimately, the Parkinson’s Outcomes Project is a cycle of learning. Physicians and

therapists need to teach what they’ve learned, learn what others have to teach, then

repeat. Together, we can help everyone committed to discovering, understanding

and sharing the most effective ways to treat Parkinson’s.

varieties of care: Inconsistent Results, Even at Expert Centers

iNcoNsistENt REsUlts EvEN at thE BEst cENtERs Centers varied in

patient-reported

health status for their

patients, with the

average health status

varying by as much

as 13 points after

adjusting for disease

severity.

Inconsistent Results Even at the Best the Centers

0

5

10

15

20

25

30

HEA

LTH

STA

TUS

%

CENTERS


Referrals for therapy at different centers

0

10

20

30

40

50

60

70

CENTERS

% R

EFER

RED

Referral rates to

physical, occupational,

speech and other

therapists varied by

as much as 50% in

our study for similar

people with mid-

stage, uncomplicated

Parkinson’s.

REfERRals foR thERapy at diffERENt cENtERs

MEdicatioNs foR Mid-staGE patiENts By cENtER In many cases, there

is little evidence to

support one choice

of medication over

another. As a result,

medication use can

vary substantially

from one neurologist

to another, even for

similar patients.

MEDICATIONS FOR MID-STAGE PATIENTS BY CENTER

0

10

20

30

40

50

60

70

80

90

100

%

PR

ESCR

IBED

CENTERS

None Standard Simple Complex


managing mood: The Importance of Addressing

Depression and AnxietyA clear finding of the study is that, taken together, depression and anxiety have

the greatest impact of health status. In fact, in a study of QII data presented at

a Parkinsons conference in 2012, scientists showed that the impact of depression

on health status is almost twice that of the motor impairments universally

associated with Parkinson’s.

At least 50 percent of people with Parkinson’s experience depression, and anxiety

is also frequently reported. Depression can be disabling, resulting in difficulty with

work or engaging in activities like exercise that can help manage symptoms. Yet

physicians often have trouble recognizing anxiety and depression, or their roles in

hampering efforts to treat Parkinson’s.

As previous studies have found, addressing depression can positively impact levels

of disability, relapse and quality of life. Indeed, participants in clinics with the most

active approach to counseling reported the lowest rates of depression. For many

people with Parkinson’s, acknowledging depression is a critical step toward more

effective treatment, and better health status overall.

ovERall coNtRiBUtioN to hEalth Mood/depression and

mobility are the most

important contributors

to overall health

status for people

with Parkinson’s, and

should be priorities

in evaluating patients

and developing care

plans.

Overall Contribution to Health

0 10 20 30 40 50 60 70

Social Support

Pain

Stigma

Communication

Cognition

Mobility

Activities of Daily Living

Mood & Depression

PERCENTAGE


Depression in Parkinson’s disease is mainly caused by a chemical imbalance in

the brain; however, it can also arise from the simple sadness associated with the

diagnosis of the disease.

Antidepressants are often effective in reducing symptoms, but they should seldom

be used in isolation. A mix of medication, exercise and counseling is typically most

helpful in addressing depression, and may help further engage patients and families in

other critical aspects of managing care for Parkinson’s.

Depression in Parkinson’s Disease

NPF Recommends: • Physicians should screen you for depression at least once a year.

• You should discuss any change in your mood with a healthcare professional, and make sure that your Parkinson’s doctor is aware.

• You should bring a family member with you to your doctor’s office and he or she should be encouraged to discuss any changes in your mood.

dEpREssioN caRE Different centers will

treat between 45% and

75% of people with

signs of depression,

and how they treat

people differs.

Some rely mostly

on antidepressant

medications, while

others use counseling

extensively.

Depression Care

0

20

40

60

80

% W

ITH

SIG

NS

OF

DEP

RES

SIO

NR

ECEV

ING

CA

RE

CENTERS

Any Treatment Antidepressants Counseling


mobility: Second Most Important Driver

of Health StatusBradykinesia, or slowness of movement, is present in all cases of Parkinson’s. Indeed, impaired mobility in general is considered a defining element of the disease, and it

was the second most influential factor on health status among study participants.

The impact of mobility problems can be serious. They can affect your balance, your

ability to walk, and even everyday tasks such as feeding and bathing. These problems

can result in falls, injury and even death. In addition, difficulty walking can keep you

from doing things that are important to you. Withdrawal from familiar activities can

affect personal relationships, and even how you think others perceive you.

The best way to protect your motor function is to use it regularly. A well-designed

exercise plan can significantly improve almost everything about your health, including

stabilizing your walking, calming tremor, improving mood, and possibly even slowing

progression of the disease. Regular exercise is typically associated with a lower care

burden, as well. Even as motor symptoms progress, many respond well to medical and

surgical treatment. But staying active remains absolutely critical.

Regular exercise (more

than 2.5 hours per

week) provides many

benefits to people

with Parkinson’s. It

is associated with

lower degrees of

mobility impairment,

caregiver burden,

and impairment in

everyday activities.

0

5

10

15

20

25

RegularCasualNone

Caregiver Strain vs Exercise Frequency

PER

CEN

TAG

E

0

10

20

30

40

50

RegularCasualNone

Mobility Impairment vs Exercise Frequency

PER

CEN

TAG

E

MoBility iMpaiRMENt vs ExERcisE fREqUENcy caREGivER stRaiN vs ExERcisE fREqUENcy


NPF Recommends:

• To feel good enough to exercise regularly, take your medications on time.

Keep to your schedule.

• Exercise can help improve all your symptoms. Any exercise you can do safely will help.

• Talk with your doctor about both exercise and physical therapy. On your next visit, discuss the type of program you should pursue.

• If your symptoms become hard to manage, talk to your doctor about your options. There are many ways to try to control difficult symptoms.

• A physical or occupational therapist who understands Parkinson’s can be a great resource between your physician visits.

Although mobility impairment is a central challenge of Parkinson’s, early data from

the QII study suggests the importance of a holistic approach. People who addressed

mood and mobility together, and who used a full complement of elements including

medicine, surgery and exercise, were the most successful in managing the mobility

aspects of their condition.

Your symptoms are connected. Better mobility reduces depression, treating

constipation helps with mobility, and so on. Talk to your doctor about whatever is

bothering you.

Mobility and Motor Control: Findings of the Quality Improvement Initiative


the future of Parkinson’s: The Evidence We Need to Personalize Care

No two people face Parkinson’s in quite the same way. People vary substantially in

their combination of symptoms, rate of progression, and reaction to treatment.

It may be that no two doctors approach Parkinson’s in quite the same way, either;

unlike many other diseases, there are no clearly established standards for treating a

person with Parkinson’s in a particular circumstance. As a result, two neurologists who

might prescribe identical therapies for similar patients with Alzheimer’s disease would

likely recommend different strategies for similar patients with Parkinson’s.

The reason is that, despite many prior studies on specific elements of the disease,

none has successfully evaluated the full range of factors that bear on the experience

of the disease. The Parkinson’s Outcomes Project is beginning to change that.

By embracing the diversity of people with Parkinson’s, we are gathering the most

complete data set ever assembled. By involving the world’s best neurologists at

NPF Centers of Excellence, we are developing the best insights into individual

care. And by working together, we will define standards of care for people with

Parkinson’s everywhere.

For many people, one

issue stands out as

the most challenging

part of Parkinson’s.

Over half the people

in the study had one

aspect of Parkinson’s

that was much more

troubling than the

others. Everyone’s

journey is different.

Participants where one issue stands out

0 2 4 6 8 10 12 14 16

Mobility

Mood & Depression

Activities of Daily Living

Cognition

Communication

Pain

Social Support

Stigma

PERCENTAGE

paRticipaNts whERE oNE issUE staNds oUt


Baylor College of Medicine Houston, TX

Joseph Jankovic, MD

Center PrinCiPal investigator

Christine Hunter, RN, CCRC

Center Coordinator

Beth Israel Deaconess Medical Center Boston MA

Daniel Tarsy, MD


Althea Silver, MPH, BSN, RN

Center Coordinator

Georgia Health and Science University Augusta, GA

John Morgan, MD, PhD


Lisa Bush

Zachary Martin

Center Coordinators

Georgetown UniversityWashington, DC

Fernando Pagan, MDCenter PrinCiPal investigator

Helen Howard, MA, RNCenter Coordinator

Johns Hopkins University Baltimore, MD

Zoltan Mari, MD


Rebecca Dunlop, RN, BSN

Arita McCoy, RN

Center Coordinators

Centre for Movement Disorders Toronto, Canada

Mark Guttman, MD


Alanna Sheinberg

Kevin Sorokin

Center Coordinators

Mount Sinai Medical Center New York, NY

Barbara Changizi, MD


Joan Bratton

Amber Servi

Center Coordinators

Muhammad Ali Parkinson Center of Barrow Neurological Institute Phoenix, AZ

Anthony Santiago, MD


Margaret Anne Coles, BSR, MQI, OTR/L

Patty Hatton, CTRS

Center Coordinators

Northwestern University Chicago, IL

Tanya Simuni, MD


Elaina Ziehm

Center Coordinator

Parkinson’s outcomes Project: Participating Centers of Excellence

The QII, part of the Parkinson’s Outcome Project, is overseen by a steering committee of the lead

investigators at each participating NPF Center of Excellence and a group of leaders in care quality from

the broader community.

At the 20 participating centers, 153 physicians, supported by 96 research assistants, have participated in

delivering care to the more than 5,500 people with Parkinson’s in the study. Each of these individuals is

engaged daily in delivering the best care they can to people with Parkinson’s, and each joins us in our

goal of changing the course of Parkinson’s.


Oregon Health and Science University Portland, OR

John Nutt, MD


Anna Lovelace

Center Coordinator

Parkinson’s Institute and Clinical Center Sunnyvale, CA

Melanie Brandabur, MD


Lizza Reys

Center Coordinator

Struthers Parkinson’s Center Golden Valley, MN

Sotirios Parashos, MD, PhD


Joan Gardner, RN

Catherine Wielinski, MPH

Center Coordinators

University of Florida Gainesville, FL

Michael Okun, MD

study advisor

Irene Malaty, MD


Amanda Eilers

Center Coordinator

University of Kansas Medical Center Kansas City, KS

Kelly Lyons, PhD


Jessica Cooper, BS, BGS

Center Coordinator

University of South Florida Tampa, FL

Robert Hauser, MD, MBA


Claudia Rocha

Holly Delgado, RN

Center Coordinators

Vanderbilt University Nashville, TN

Thomas Davis, MD


Kelly Arney, MSSW

Center Coordinator

University of Pennsylvania Philadelphia, PA

Nabila Dahodwala, MD


James Minger

Center Coordinator

Radboud University Nijmegen Medical Center Nijmegen, The Netherlands

Bastiaan Bloem, MD


Bart Post, MD

Center Coordinator

Tel-Aviv Sourasky Medical Center Tel-Aviv, Israel

Nir Giladi, MD study advisor

Tanya Gurevich, MD


Naama Cohen

Dana Yekutieli Tzur, BSc

Center Coordinators

Toronto Western Hospital Toronto, Canada

Janis Miyasaki, MD, FRCPC


Julie Racioppa

Center Coordinator

Other Study Advisors

Eric Cheng, MD

University of California San Francisco,

San Francisco, CA

Laura Marsh, MD Michael E. DeBakey VA Medical Center,

Houston, TX


The main findings reported in this document are derived from the QII study and presentations and

publications based on its information. These publications include:

A. Hassan, S.S. Wu, P. Schmidt, I. Malaty, Y.F. Dai, J.M. Miyasaki, M.S. Okun. What are the issues facing

Parkinson’s disease patients at ten years of disease and beyond? Data from the NPF-QII study. Parkinsonism

and Related Disorders. 2012. 18(8):925-30.

A. Hassan, S.S. Wu, P. Schmidt, I. Malaty, M.S. Okun, Risk Factors for ER and Hospitalization in Parkinson’s

disease: Results from the NPF Quality Improvement Initiative (NPF-QII). Movement Disorders Society 16th

International Congress. Dublin, Ireland. 2012.

J.D. Jones, I. Malaty, C.C. Price, M.S. Okun, D. Bowers. Health comorbidities and cognition in 1948 patients

with idiopathic Parkinson’s disease. Data from the NPF-QII study. Parkinsonism and Related Disorders. 2012.

In press.

M. Kwasny, O. Oguh, B. Stell, T. Simuni, on behalf of the NPF-QII investigators. Speech therapy utilization in

Parkinson’s disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012.

J.G. Nutt, A.D. Siderowf, M. Guttman, E.C. Nelson, P. Schmidt, J. Zamudio, S.S. Wu, M.S. Okun, on behalf

of the NPF-QII investigators. Correlates of health-related quality of life (HRQL) in Parkinson’s disease.

Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012.

O. Oguh, M. Kwasny, J. Carter, T. Simuni, on behalf of the NPF-QII investigators. Predictors of caregiver

burden in Parkinson’s disease. Movement Disorders Society 16th International Congress. Dublin, Ireland.

2012.

O. Oguh, M. Kwasny, T. Simuni C., Zadikoff on behalf of the NPF-QII investigators. Racial disparities in access

to deep brain stimulation. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012.

O. Oguh, M. Kwasny, B. Stell, T. Simuni, on behalf of the NPF-QII investigators. Predictors of caregiver

burden in Parkinson’s disease. American Academy of Neurology 64th Annual Meeting. New Orleans, Louisiana.

2012.

References


O. Oguh, M. Kwasny, B. Stell, T. Simuni, on behalf of the NPF-QII investigators. Predictors of exercise habits

in Parkinson’s disease. Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012.

M.S. Okun, A. Siderowf, J.G. Nutt, G.T. O’Conner, B.R. Bloem, E.M. Olmstead, M. Guttman, T. Simuni,

E. Cheng, E.V. Cohen, S. Parashos, L. Marsh, I. Malaty, N. Giladi, P. Schmidt, J. Oberdorf,. Piloting the NPF

data-driven quality improvement initiative. Data from the QII study. Parkinsonism and Related Disorders.

2010. 16(8):517-21.

S.A. Parashos, C.L. Wielinski, on behalf of the NPF QII investigators. National Parkinson Foundation Quality

Improvement Initiative: Risk Factors for Falls in Parkinson Disease. Movement Disorders Society 16th

International Congress. Dublin, Ireland. 2012.

P. Schmidt, M.S. Okun, A.D. Siderowf, J.G. Nutt, G.T. O’Conner, B.R. Bloem, E.M. Olmstead, M. Guttman,

T. Simuni, E. Cheng, S.A. Parashos, L. Marsh, I.A. Malaty, N. Giladi, S.S. Wu, J. Oberdorf. Are results from PD

trials generalizable? The NPF database reveals a mismatch between typical clinic populations and subjects in

PD trials. World Parkinson’s Congress 2nd International Congress. Glasgow, Scotland. 2010.

P. Schmidt, A.D. Siderowf, M. Guttman, E. Nelson, J. Zamudio, M.S. Okun, J.G. Nutt, on behalf of the NPF-

QII investigators. How should pushing off or the use of assistive devices be incorporated in the timed up and

go (TUG)? Movement Disorders Society 16th International Congress. Dublin, Ireland. 2012.

P. Schmidt, J. Zamudio, M. Guttman, J. Nutt, A. Siderowf, E. Nelson, on behalf of the NPF-QII investigators.

Variation of patient-reported outcomes (PDQ-39) in a cross-sectional analysis of the NPF-QII research

registry. American Academy of Neurology 64th Annual Meeting. New Orleans, Louisiana. 2012.

P. Schmidt. Current and future impact on clinical practice. Movement Disorders Society 16th International

Congress. Dublin, Ireland. 2012.

B. Stell , O. Oguh, M. Kwasny, T. Simuni, on behalf of the NPF-QII investigators. Utilization of antidepressants

and mental health services in a large cohort of patients with Parkinson’s disease. Movement Disorders

Society 16th International Congress. Dublin, Ireland. 2012.


In addition to the QII study, important points and recommendations concerning Parkinson’s are drawn

from a range of publications, including:

J.M. Miyasaki, K. Shannon, V. Voon, B. Ravina, G. Kleiner-Fisman, K. Anderson, L.M. Shulman, G. Gronseth,

W.J. Weiner; Quality Standards Subcommittee of the American academy of neurology. Practice Parameter:

evaluation and treatment of depression, psychosis, and dementia in Parkinson disease (an evidence-based

review): report of the QualityStandards Subcommittee of the American Academy of Neurology. Neurology.

2006. 66(7):996-1002.

S.K. Van Den Eeden, C.M. Tanner, A.L. Bernstein, R.D. Fross, A. Leimpeter, D.A. Bloch, L.M. Nelson. Incidence

of Parkinson’s disease: variation by age, gender, and race/ethnicity. American Journal of Epidemiology. 2003.

157(11):1015-22.

J.M. Pavon, H.E. Whitson, M.S. Okun. Parkinson’s disease in women: a call for improved clinical studies and

for comparative effectiveness research. Maturitas. 2010. 65(4) 352-8.

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recommendations. Movement Disorders. 2004. 19(9):1020-8.

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Over the past two years, the National Parkinson Foundation has invested more than $2 million in this study.

This important research initiative is made possible by the support of thousands of people like you who

made a donation to support the National Parkinson Foundation, and generous support from the following

foundations and corporations:

Abbott

Braman Family Foundation, Inc.

Major League Baseball Players Trust

Parkinson Association of Minnesota

Parkinson’s Unity Walk

South Palm Beach County, Chapter of the National Parkinson Foundation

St. Jude Medical

Teva Neuroscience, Inc.

The Greenberg-May Foundation, Inc.

The Kinetics Foundation

The Leir Charitable Foundation

The Thompkins-Broll Family Foundation

QII Study Support

About the National Parkinson Foundation

Unique among the Parkinson’s organizations, the National Parkinson

Foundation (NPF) has a singular focus: our mission is to improve

the quality of care through research, education and outreach.

We have created a global network serving the needs of the

Parkinson’s community including:

• 41 Centers of Excellence at top medical centers around the world,

including 26 in the U.S. and 15 internationally

• An extensive network of chapters and support groups across

the U.S., serving more than 100,000 people with Parkinson’s

and their families

• Website and educational materials that reach more than

1 million people each year.

Find Answers. Change Lives. Beat Parkinson’s.

1501 NW 9th AvenueBob Hope RoadMiami, FL 33138

Parkinson.org web305.243.6666 office305.243.6073 fax800.4PD.INFO helpline

Documents

Parkinson s outcomes Project Report to the Community Outcomes... · Ultimately, the Parkinson’s Outcomes Project is a cycle of learning. Physicians and Physicians and therapists