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Juvenile Arthritis Patients and Parents Share Their Perspectives with Health Care Leaders to Shape the Future of Drug Development

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ATLANTA, August 2, 2018 Today, the Arthritis Foundation and the largest network of pediatric rheumatologists – the Childhood Arthritis and Rheumatology Research Alliance (CARRA) – are hosting the externally-led Juvenile Idiopathic Arthritis (JIA) Patient-Focused Drug Development (PFDD) meeting in Washington D.C. The JIA PFDD meeting will give the U.S. Food and Drug Administration (FDA) and other regulatory agencies, drug developers, health care providers and academic researchers the opportunity to hear directly from JIA patients and their families about how arthritis affects their lives and their experiences with current treatments. The meeting will address the following topics: 

  • Daily impact of JIA and the symptoms that affect patients the most; 

  • Perspectives on current approaches to treating JIA; and  

  • Opinions on current clinical trial designs used to test treatments for JIA. 

JIA is the most common form of childhood arthritis and the dialogue from the JIA PFDD meeting will provide the rationale to accelerate treatments that are clinically meaningful to patients living with JIA,” said Guy Eakin, PhD, senior vice president of scientific strategy, Arthritis Foundation. “By sharing the patient perspective with the FDA and other healthcare industry leaders, we can help influence the future of drug discovery as well as learn more about this community’s needs and how the Arthritis Foundation can support them.”  

This is the second patient-focused drug development meeting that the Arthritis Foundation has shepherded. In March 2017, the Arthritis Foundation held the Osteoarthritis (OA) PFDD meeting where patients shared how OA impacts their lives and their experiences with treatments. The learnings from patients were shared with the FDA, among other health care leaders, and used to create The Voice of the Patient report.  

“This is an absolutely essential meeting,” said Dr. Robert Fuhlbrigge, president, CARRA. “As a community of researchers, it’s not sufficient to make assumptions about patient and family needs. This is a very special opportunity to bring families together and dedicate time to the simple act of listening.” 

JA parents plan to participate in the JIA PFDD meeting, and a report of the findings and results from the meeting will be posted on the Arthritis Foundation’s website. To learn more about the JIA PFDD meeting click here.     

About the Arthritis Foundation: 

The Arthritis Foundation is the Champion of Yes. Leading the fight for the arthritis community, the Foundation helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections. The Arthritis Foundation’s goal is to chart a winning course, guiding families in developing personalized plans for living a full life – and making each day another stride toward a cure. The Foundation also publishes Arthritis Today, the award-winning magazine that reaches 4 million readers. 

About the Childhood Arthritis and Rheumatology Alliance (CARRA): 

CARRA is a non-profit organization of more than 500 physicians, researchers and other healthcare professionals throughout the US and Canada.  Almost every pediatric rheumatologist in North America is a member of CARRA.  CARRA was established so that pediatric rheumatologists can work together to perform better, more effective research.  Providing the platform so these many pediatric rheumatologic researchers can work together enables CARRA to perform larger studies which will lead to faster and more meaningful results and answers.

Press Contact:

Claire Villines

404-310-0853

cvillines@arthritis.org       

 

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