Doing Research with PR-COIN
In a learning network, research and clinical improvement work hand in hand towards improving outcomes. PR-COIN encourages researchers to leverage our patient and parent group, as well as our network of Quality Improvement and research trained centers to quickly test research findings in clinics. PR-COIN’s registry of longitudinal patient data can be a resource to explore new treatment strategies, and discover better ways to care for our children.
What is PARTNERS
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. PARTNERS' 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.
Many patients do not understand what it means to participate in research. One great example of research participation is the completion of a survvey, stating how you feel or what is important to you. Other examples include sharing your healthcare data, suggesting research topics, helping to design studies, and raising awareness about current studies and their results. There are many ways to participate in research and it is important that your voice is heard!
Comparative Effectiveness Research (CER)
Comparative effectiveness research (CER) is research that compares different treatment options. One exmple of this would be the comparison of two different medications and their effectiveness. Patients often times have very little evidence-based information when faced with these decisions. As a result, patients are forced to rely on their physician’s opinion and experience using a particular medication.
Parents and patients were asked what word comes to mind when they heard the word "research". Over 25% of parents replied with the word “hope”. This is a powerful message as to the importance of research to those dealing with these diseases on a daily basis.