Spondylitis Association of AmericaSpondylitis Association of AmericaSpondylitis Association of AmericaSpondylitis Association of America

20 Years of Setting the Course20 Years of Setting the Course

A History of FirstsA History of FirstsA History of FirstsA History of Firsts

• First US symposium for AS patients (1984)First US symposium for AS patients (1984)

• First US symposium for health professionals First US symposium for health professionals (1984)(1984)

• First comprehensive book for patients, First comprehensive book for patients, Straight Talk on Spondylitis Straight Talk on Spondylitis (1985)(1985)

• First pamphlet on Juvenile AS (1989)First pamphlet on Juvenile AS (1989)

• First Spanish language pamphlets for AS in First Spanish language pamphlets for AS in U.S. (1992) U.S. (1992)

Spondylitis Association of America

SpA

Ankylosing Spondylitis

UndifferentiatedSpondyloarthritis Reactive Arthritis

Spondylitis ofInflammatoryBowel Disease

Psoriatic Arthritis

PsA Patient SurveyPsA Patient Survey PsA Patient SurveyPsA Patient Survey

• 60% diagnosed within the last 10 years.60% diagnosed within the last 10 years.

• 90% reported that the arthritis has been more 90% reported that the arthritis has been more difficult than the psoriasisdifficult than the psoriasis

• Biggest challenges: chronic fatique, physical Biggest challenges: chronic fatique, physical limitations, chronic painlimitations, chronic pain

• Most important issues: educating doctors to Most important issues: educating doctors to make early diagnosis, treatmentsmake early diagnosis, treatments

CollaborationsCollaborationsCollaborationsCollaborations

• Co-founded the AS International Federation Co-founded the AS International Federation (ASIF) (1988)(ASIF) (1988)

- helped 24 countries establish AS - helped 24 countries establish AS organizationorganization

• Co-sponsored a 4-day international Co-sponsored a 4-day international research symposium with UT Texas/Dallas research symposium with UT Texas/Dallas (1990)(1990)

• Co-sponsored a 2-day conference with NIHCo-sponsored a 2-day conference with NIH

- 70 scientists from diverse fields (1998)- 70 scientists from diverse fields (1998)

AS Family Genetic Project (AS Family Genetic Project (NIH - UT Houston)NIH - UT Houston)AS Family Genetic Project (AS Family Genetic Project (NIH - UT Houston)NIH - UT Houston)

• Vision: to accelerate researchVision: to accelerate research

• First project - AS Family Genetic ProjectFirst project - AS Family Genetic Project

• Raised $150,000 start-up fundsRaised $150,000 start-up funds

• Partnered with Dr. Reveille, UT HoustonPartnered with Dr. Reveille, UT Houston

• Formed NASC - a consortium of 10 university Formed NASC - a consortium of 10 university medical centers and SAAmedical centers and SAA

• NIAMS funding - $5.5 million grantNIAMS funding - $5.5 million grant

• SAA’s Role: 1) recruitment & screening site, SAA’s Role: 1) recruitment & screening site, 2) designated as clinical coordinating center2) designated as clinical coordinating center

““Never before has NIAMS funded an on-going Never before has NIAMS funded an on-going study with a patient-advocacy organization study with a patient-advocacy organization acting as the coordinating center. It’s SAA’s acting as the coordinating center. It’s SAA’s ability to reach families which is critical for the ability to reach families which is critical for the success of this exciting project.”success of this exciting project.”

““Never before has NIAMS funded an on-going Never before has NIAMS funded an on-going study with a patient-advocacy organization study with a patient-advocacy organization acting as the coordinating center. It’s SAA’s acting as the coordinating center. It’s SAA’s ability to reach families which is critical for the ability to reach families which is critical for the success of this exciting project.”success of this exciting project.”

Susana Sztein, M.D.Susana Sztein, M.D.Chief of Rheumatic Diseases Branch Chief of Rheumatic Diseases Branch

NIAMSNIAMS

AS Life Impact Study AS Life Impact Study (Industry)(Industry) AS Life Impact Study AS Life Impact Study (Industry)(Industry)

• A survey of AS patients’ experiences and A survey of AS patients’ experiences and needsneeds

• Conducted by Harris Interactive (the Harris Conducted by Harris Interactive (the Harris Poll)Poll)

• Accepted for podium and poster presentations Accepted for podium and poster presentations at ACR 2003at ACR 2003

• Being prepared for publicationBeing prepared for publication

AS Guidance Document for Industry AS Guidance Document for Industry (ASAS)(ASAS) AS Guidance Document for Industry AS Guidance Document for Industry (ASAS)(ASAS)

• Facilitated the development of an AS Guidance Document for submission to the FDA in June 2003.

• SAA’s Role:

1) Participation in the selection of the steering committee

2) Project coordinator for meeting in D.C.

3) Obtaining sponsors

4) PR Role

SpA-US Working Group SpA-US Working Group (to be named)(to be named) SpA-US Working Group SpA-US Working Group (to be named)(to be named)

• SAA’s role:SAA’s role:

1) Represented on the steering 1) Represented on the steering committeecommittee

2) Project coordinator for the 2) Project coordinator for the organizational meeting held in organizational meeting held in

August, 2003August, 2003

3) Obtaining sponsors3) Obtaining sponsors

Lessons LearnedLessons LearnedLessons LearnedLessons Learned

Stay focused on our common goalsStay focused on our common goals

1. Together, clarify goals1. Together, clarify goals

2. Together, develop a written plan, timetable and 2. Together, develop a written plan, timetable and milestones milestones

3. Delineate responsibilities and policies (Define 3. Delineate responsibilities and policies (Define what each partner will and will not do.)what each partner will and will not do.)

4. Communicate, communicate, communicate4. Communicate, communicate, communicate