The
National Data Bank for Rheumatic Diseases (NDB) is a research data bank for
the study of arthritis and rheumatic conditions. By rheumatic conditions,
we mean rheumatoid arthritis (RA), osteoarthritis (OA), fibromyalgia, lupus,
polymyositis, low back pain, tendonitis, and many other problems- anything that you would see a rheumatologist or joint specialist about.
The NDB project collects data on rheumatic conditions directly from persons
who have these problems. The goals of the project are to advance knowledge
about the causes, outcomes, costs, treatments, and results of treatments related
to rheumatic conditions. Another important goal of the NDB project
is to stimulate research and study by health professionals by making NDB data
available for medical research.
We
invite you to help with this important research by joining the project. There are more details included in the following information.
People volunteer to participate in research for a variety of reasons. The primary reason people give for NDB participation is that they want to contribute to medical research that may help others with their disease. With a debilitating disease like arthritis or other rheumatic conditions it can sometimes be difficult to volunteer in a traditional setting. NDB research allows you to volunteer in an important way. By learning about your condition over time, we hope to give researchers the tools to improve treatment for people with rheumatic conditions and improve their quality of life.
Generally, we mail questionnaires to participants every 6 months. When you first join, we will send you an additional special questionnaire to obtain some background information about you.
Only the research staff. They look at the questionnaire to see if it is complete and to make sure that your name and address are correct for mailing. Once your information is in our research data bank your name is removed for research purposes. That is, any researcher using the data bank for medical research cannot identify you.
No. We do not give away names or sell them, or make them available to anyone else. We have 25 years experience collecting arthritis data and protecting the confidentiality of research participants.
No. We pay all of the postage and have a toll free line for questions at 1-800-323-5871.
Questionnaires take approximately 60 minutes to complete, once every six months.
Those of you who return your questionnaire within two weeks of receiving it are eligible for a special reward.We give away $1,000 prizes to several participants who return their questionnaires promptly as a token of our gratitude for helping with this research.The participants who receive a $1,000 prize are chosen at random in a special drawing and, with permission, their names are announced in our newsletter.
We send an NDB Newsletter to each participant. This newsletter contains information about arthritis, new treatments, research in general, and the results of research that you have participated in by completing the questionnaires. Click here to see NDB Newsletters.
We provide and monitor a discussion group and bulletin board on our website for use by research participants so that rheumatic disease related questions may be discussed.
There is the altruistic compensation of knowing that you have helped to improve arthritis treatment and outcome, as well as increasing the medical community's knowledge of your condition by participating in this research project.
Complete the enrollment questionnaire on the enrollment page. We will contact you by email, mail or phone, After you enroll you will receive a research questionnaire and NDB newsletter every 6 months.
We hope you won't do this because this research depends on a continuing group of people helping together over time. But, of course, you may discontinue participation at any time and for any reason.
We ask many different kinds of questions. Here are some of the areas in which we ask questions.
The information you provide will be entered into a computer data bank for use by medical researchers. Researchers describe their findings in articles that are published in medical journals and in presentations at national and international meetings. That way, all doctors who treat arthritis are able to receive the benefit from the research. What they learn will help them to provide better medical care to people with arthritis and similar medical conditions.
The project director is Dr. Frederick Wolfe. Dr. Wolfe is a rheumatologist, winner of the American College of Rheumatology Distinguished Rheumatologist award, and has been designated as a "Master of the American College of Rheumatology." He has a long list of research publications. For information about the director click here or go to the CV page.
Yes. More than 900 rheumatologists from across the U.S. have helped in this arthritis research project.
There are over 10,000 participants in the NDB. Each one is important because everyone's experience is unique. Since we have so many participants in the NDB research project, our research is able to answer questions about treatment effectiveness and side effects that could not otherwise be obtained ordinary medical studies.
Because this is a research project, we are unable to answer individual questions about treatment and symptoms. You can post questions to the NDB discussion bulletin board, however. You may also find that our website is a valuable source of information.
The term rheumatic comes from the Greek, and we often use it as 'rheumatism.' In reality it doesn't make good sense, but is the term that was first applied to arthritic disorders. As it is now used it applies to to any disorder in which joints can be involved. This includes conditions such as lupus, polymyositis, polymyalgia rheumatica, arteritis, gout, rheumatoid arthritis, osteoarthritis, fibromyalgia and back pain - in fact, anyproblem that you might see a rheumatologits or joint specialist for. Please CLICK HERE for a complete list of rheumatic diseases.