Databanks and registries in the rheumatology community began actively collecting relevant data from patients that can be used in both non-pharmaceutical and drug development research efforts. However, most registries – while rheumatology in nature – typically only include patients as respondents.
However, groups such as FORWARD, The National Databank for Rheumatic DiseasesFORWARD, The National Databank for Rheumatic Diseases is the largest patient-reported research databank for rheumatic disorders in the United States. FORWARD is our organization’s core mission over the last 22 years—to advance research and discovery in Rheumatology and beyond through human connection and deep insight. As a nonprofit research group, the Forward Databank has over a thousand research publications, over 75 thousand patient participants, and over a 100 scientist collaborators. https://forwarddatabank.org/ , a patient-powered registry that collects life experiences from a wide variety of patients with RMDs, offers participants ways of advancing knowledge about the costs, outcomes, and causes of rheumatic diseases.
The patient perspective is enhanced, in part, due to FORWARD’s Co-Director, who was originally diagnosed with Juvenile Idiopathic Arthritis, and through their continued collaborations with patient organizations.
CoPI: Co-production of stakeholder groups