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PARTNERS Research Network

PARTNERS brings together children, their families, and health care organizations to improve health care and advance medical knowledge in the field of pediatric rheumatology. 

The vision of PARTNERS is to improve the lives of children with rheumatic diseases through research that matters to YOU.

Q&A
Who is in the PARTNERS network?

PARTNERS was funded by PCORI and consists of 3 advocacy organizations, including the Lupus Foundation of America, the Arthritis Foundation, and the Cure JM Foundation, as well as the CARRA Network and a quality-improvement network called PR-COIN.

What kind of research does PARTNERS do?

PARTNERS helps share information about studies on children with rheumatic diseases. Members of the PARTNERS group are also involved with carrying out studies. All of the studies that PARTNERS participates in are reviewed by a committee that includes health care professionals and patients. 

What kind of network is PARTNERS?

PARTNERS is a patient-powered research network (PPRN). This means that the research and operations of PARTNERS are governed by patients and research groups together. Read more about PPRNs and patient data networks.

Who funds PARTNERS?

The Patient-Centered Outcomes Research Institute (PCORI) funds the PARTNERS PPRN. You can learn more about PCORI at pcori.org.

How can I get involved in PARTNERS?

You can get involved with PARTNERS by joining our Research.forME Lupus Registry. PARTNERS looks for a diverse group of volunteers who may take part in research in many ways. For example, by completing surveys, being on workgroups or committees, or creating and reviewing PARTNERS materials.

Who are the PARTNERS organizations?
CARRA

The Childhood Arthritis and Rheumatology Research Alliance was created to ease research aimed at finding the cause and cure for childhood rheumatic diseases. Nearly every pediatric rheumatologist in North America is a member of CARRA. CARRA’s vision was to have every patient participate in research in some way. PARTNERS helps bring this vision to reality.

PR-COIN

The Pediatric Rheumatology Care and Outcomes Improvement Network is a network of rheumatologists, nurses, therapists, social workers, and support staff at rheumatology centers who, in partnership with families, are all working together to transform how care is delivered to children with Juvenile Idiopathic Arthritis (JIA). The aim of PR-COIN is to develop and evaluate specific disease management strategies to improve the care of children with JIA and to determine how best to incorporate these strategies into clinical practice. PR-COIN is creating a sustainable network that uses a registry database to measure performance, learn more about the health status of JIA patients, as well as to inform future improvement projects.

Arthritis Foundation

The Arthritis Foundation is the largest and most trusted nonprofit organization dedicated to addressing the needs and challenges of people living with arthritis.

Lupus Foundation of America

The Lupus Foundation of America is a nonprofit devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact.

Cure JM Foundation

Founded in 2003, Cure JM Foundation® is the only organization solely dedicated to supporting Juvenile Myositis (JM) research and improving the lives of families affected by JM. JM, which includes Juvenile Dermatomyositis and Juvenile Polymyositis, is a group of rare and life-threatening autoimmune diseases, with approximately two to four children in a million diagnosed each year. Cure JM Foundation’s mission is to increase awareness, provide support to the families battling this disease, and fund research into better treatments and an eventual cure for JM.

Learn more about our PARTNERS network. Watch our PARTNERS presentation.