May 2015


To expose participants to diverse registry strategies and to brainstorm how these strategies might lead to synergistic relationships and collaborative efforts to accelerate science and improve health outcomes for people with arthritis and related diseases.

The Arthritis Foundation’s new scientific strategy is designed to help us take a more nimble approach to accelerating science, so that more people with arthritis say YES to a better life. 

WHO: Subject matter experts who manage registries and analyze registry data

WHAT: Arthritis Foundation Registry Workshop: Improving Health Outcomes for People with Arthritis

WHERE: Hilton Atlanta Airport

WHEN: May 13-14, 2015

HOW: Learn how arthritis-relevant registries can work together to accelerate improving health outcomes for people with arthritis.

PROGRAM: Download the program here

Our special thanks for the support of Bristol-Mysers Squibb!


May 13:


Arthritis Foundation President and CEO, Ann Palmer

Arthritis Foundation National Scientific Director, Amanda Niskar

Arthritis Foundation Registry Workshop Planning Committee

Co-Chairs, Salahuddin (Dino) Kazi and Aricca Van Citters


Arthritis Registries

• Rheumatology Informatics System for Effectiveness (RISE):

Salahuddin (Dino) Kazi

• Corrona: Katherine Saunders

• Arthritis Patient-Powered Research Network (AR-PoWER):

Ben Nowell

• Arthritis Internet Registry (AIR): Kaleb Michaud

• Veterans Affairs Rheumatoid Arthritis (VARA): Kaleb Michaud


Arthritis and Related Diseases Registries

• Canadian Scleroderma Registry: Murray Baron

• Citizen Pscientist: Michael Siegel

• Lupus Registries: Charles (Chad) Helmick

• Accelerating Medicines Partnership (AMP): Purvesh Khatri


Special Topics

• Integration of Real-World Data into Strategic Decision Making:

Ashley Woolmore

• Veterans Affairs Informatics and Computing Infrastructure

(VINCI) and Big Data Analytics: Yelena Yesha

• How Registry Data Can Inform Clinical Decision Making:

David Covall


Lessons Relevant for Strengthening Arthritis and Related Disease Registries

• Cystic Fibrosis Foundation Patient Registry: Alexander Elbert

• North American Association of Central Cancer Registries

(NAACCR): Lori Havener

• National Quality Registry Network (NQRN):

Seth Blumenthal


Childhood Arthritis Registries

• Intermountain Database of Childhood Rheumatic Diseases:

Sampath Prahalad

• Pediatric Rheumatology Care and Outcomes Improvement

Network (PR-COIN): Esi Morgan DeWitt

• Childhood Arthritis and Rheumatology Research Alliance

(CARRA) Registry: Timothy Beukelman

• Patient Powered Research Networks (PPRNs) and Clinical

Data Research Networks (CDRNs): Marc Natter


Engagement of People With Arthritis

• Engaging People With Arthritis in Research:

Jennifer Horonjeff

• Challenges of Drug Discovery for People with Arthritis:

Jennifer Cutie

• The Role of People With Arthritis in the Health System:

Janet Wyatt


Linked Data

• How Registries and Linked Data Support Comparative

Effectiveness Research – What’s Necessary to Link Across

Data Systems: Jeffrey Curtis


May 14:

Learning Health Systems in Action

• Transforming Outcomes at Scale: Uma Kotagal

• Healthier Together: Collaborative Networks of Patients,

Clinicians and Researchers to Transform Chronic Illness Care:

Peter Margolis and Justin Vandergrift

• Swedish Approach to Registry Development: Johan Thor