PARTNERS brings together children, their families and the organizations listed above to improve healthcare and advance medical knowledge in the field of pediatric rheumatology. Watch the following presentation to learn more about the vision of PARTNERS and the contribution each organization makes.
Patient-Centered Outcomes Research Institute (PCORI)
Formed in 2010 through the Affordable Care Act, PCORI 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 of 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
Funded by PCORI, PCORnet is a national patient data network consisting of data from large multi-centered health care systems like hospitals and data from small disease-specific caregivers and patients. The large centers are called Clinical Data Research Networks (CDRNs) and the disease-specific 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. http://www.pcornet.org/
- Patients - pediatric lupus and arthritis patient families.
- 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. www.carragroup.org
- 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 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. https://pr-coin.org/
- Arthritis Foundation - The largest and most trusted nonprofit organization dedicated to addressing the needs and challenges of people living with arthritis. www.arthritis.org
- Lupus Foundation of America - 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. www.lupus.org