Projects

FORWARD is fueled by over 10,000 people who every 6 months fill out questionnaires on their specific condition(s) via our online WebQuest system, by filling out questionnaiers sent by mail, or by phone with a research assistant.

Physicians can help enroll their patients into the longitudinal study by having their patients complete a simple form.

AIR is groundbreaking study to use the power of the internet to create a community of arthritis patients for discovery research. AIR recognizes the importance of research to improve the lives of arthritis patients. At the same time, we recognize the needs of patients to discuss their disease with other patients.The purpose of AIR is to bring together a community of arthritis patients — particularly those with rheumatoid arthritis (RA) — to enable discovery research and social networking via the internet.

RALLY: The National Data Bank for Rheumatic Diseases (NDB) is a project that collects data on rheumatoid arthritis (RA) directly from persons who have this illness. The goals of the project are to advance our knowledge about the causes, outcomes, costs, treatments, and results of treatments related to RA. Another important goal of the project is to stimulate data collection and study by health professionals, and make NDB data available for medical research.

FORWARD has expanded its research, along with the help of Dr. Alexis Ogdie, Assistant Professor of Medicine and Epidemiology at the Perelman School of Medicine, University of Pennsylvania, to create the Spondyloarthritis Registry. The registry will include all diagnoses within the spondyloarthritis disease family, including psoriatic arthritis, spondyloarthritis, ankylosing spondylitis, reactive arthritis (formerly known as Reiter’s syndrome), axial spondylitis, spondyloarthopathy, and inflammatory bowel diease associated arthritis (inludes Crohn’s and ulcerative colitis).

Much of what is known and published about SLE comes from the work of a small number of academic centers. However, community rheumatologists provide most of the care for systemic lupus in the United States (see below), but often their work and skill is undervalued or unrecognized.

Behind this project is the idea that we can understand lupus and its care and outcomes better if we study it in the community rather than in tertiary centers.