When a researcher decides to do a rheumatic disease study, he or she can apply to the UPMC Arthritis Network Research Committee (which has two or more representatives of each of the practices in the Network) for permission to utilize this Registry. The researcher may be looking for people of a specific age or sex, or diagnosis. After Research Committee approval is obtained, we will contact you with details of that study. If you are interested, we will let you know what to do next.
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The Registry is currently being utilized in ten different studies. Several researchers are testing strategies to improve a rheumatoid arthritis and osteoarthritis patient’s ability to comply with treatment. Investigations are being conducted to determine the commonness of cardiovascular disease in women with rheumatoid arthritis.
Exercises are being developed to aid in the rehabilitation of knee osteoarthritis. Several popular dietary supplements that are thought to decrease osteoarthritis pain are going through the clinical trials necessary for FDA approval. If you want to know more about these studies, contact Jennifer Jablon, the Registry Coordinator, at 412-383-8674, or send an e-mail to jablonj@msx.dept-med.pitt.edu.
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No Obligations
Participants in the UPMC Arthritis Network Registry are under no obligation to participate in the studies they may be contacted about. It is possible to remain a member of the Registry even if every study request is declined. When agreeing to participate in the Registry, patients are simply agreeing to being contacted by the Registry Coordinator about upcoming research studies.
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Registry Contents
The Arthritis Network Registry now includes over 900 patients with rheumatoid arthritis, 950 with osteoarthritis, 60 with gout, 80 with osteoporosis, and 700 with fibromyalgia. This represents only a small portion of the population who suffer with these diseases. It is estimated that 15 - 18% of the population is affected by a rheumatic disorder. So, if you think about the number of people living in the Greater Pittsburgh area that would be eligible to join the Registry, only around 5% actually have joined so far. Don’t leave this for someone else to do. We want your help, too!
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Joining the Registry
The Registry is currently enrolling anyone diagnosed with osteoarthritis, rheumatoid arthritis, fibromyalgia, osteoporosis, or gout. Other diseases such as lupus and polymyositis/ dermatomyositis will be added to the Registry in the future, depending on the demand for research subjects. In order to participate, a consent form must be signed and returned as directed. If you have questions, please call the Registry Coordinator at 412-383-8674. Signing the consent form simply gives the Registry Coordinator permission to contact you regarding approved research projects and opportunities to participate in them. The Registry would love to have your help in searching for the causes and cures for the many different rheumatic disorders.
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