PARTNERS formally links childhood arthritis and lupus patients, family members, the CARRA network, the Lupus Foundation of America, the Arthritis Foundation and a quality improvement network called PR-COIN. Our vision is to improve the lives of children with rheumatic diseases through research that matters to YOU. PARTNERS is a patient-powered research network funded by PCORI.
CARRA 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 is to have every patient participate in research in some way. PARTNERS helps bring this vision to reality. www.carragroup.org
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 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. www.pr-coin.org
Founded in 1948, the Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community. They are boldly leading the fight against juvenile arthritis and childhood rheumatic diseases. The Arthritis Foundation is strongly committed to making sure you have easy access to the resources, community and care you need – and making each day another stride towards a cure. www.arthritis.org
Founded in 1977, the Lupus Foundation of America, Inc. is 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. Our mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. www.lupus.org
Formed in 2010 through the Affordable Care Act, PCORI (Patient-Centered Outcomes Research Institute) is an independent, non-profit health research organization that funds and shares research comparing the effectiveness of the various choices patients have when choosing their care. PCORI’s vision is to provide the patient with the information they need to make decisions that reflect their desired health outcomes. PCORI funds comparative effectiveness research (CER) and PCORnet. www.pcori.org
PCORnet (National Patient-Centered Clinical Research Network) is a national patient data network that collects data from large multi-centered health care systems like hospitals and data from individual caregivers and people with disease. The large centers are called Clinical Data Research Networks (CDRNs) and the disease- specific programs are called Patient-Powered Research Networks (PPRNs). The data is owned and protected by the individual CDRNs and PPRNs. The goal of PCORnet is to improve the nation’s capacity to conduct comparative effectiveness research (CER). PCORnet brings together patients, care providers and health systems to improve healthcare and advance medical knowledge. With patients and researchers working side by side, PCORnet will be able to explore the questions that matter most to patients and their families. www.pcornet.org