Most people with Lupus (SLE) get their medical care from their primary care physician or rheumatologist. Yet, most research about lupus is performed in university centers where only a small minority of people get their care, and almost no research about lupus involves the majority of people who have the condition. However, the NDB research project addresses lupus as it commonly occurs or what we call, "Lupus in the Community"; (SLEC). People in this wider community may have lupus that is different and may experience outcomes that are different from what are seen at university centers.

NDB research is concerned with important issues for people with SLE: which treatments are most effective, symptoms, side effects and long term-outcomes. In addition, we are interested in medical costs, quality of life, ability to work and function, price of medications and the extent to which medical treatments actually improve people.

NDB research adds a human touch to the important basic science and immunology work performed at university centers.

NDB performs its research primarily by getting information from people who have SLE. We do it by mailed questionnaires or secure online web forms.

If you have lupus, we need your help.

Why should I participate?

  • Participation is easy. It can be done online from home or with a postage-paid questionnaire.
  • Your answers will help others without needing to see a doctor or change treatment.
  • No obligation for joining, it's free!
  • You will have full access to your results when you finish.
  • Receive a free rheumatic disease newsletter twice a year.
  • Have the opportunity to help others like you get the answers they need

How to get started

  1. Visit our enrollment page. You'll be asked to provide consent to participate in the research.
  2. The consent form will explain how we respect your privacy, and how the information you provide will be used.
  3. After consenting, you'll begin the enrollment forms. We'll ask for your contact information, your doctor's contact information, and other ways we can reach you if necessary. We may need to contact your doctor to confirm your diagnosis.
  4. Then you'll move on to four pages of questions about your condition, which medications you are taking and have taken in the past, and your general state of health.
  5. That's it. You're almost done. Look in your email for confirmation of your enrollment.
  6. Once you have completed the enrollment form, you are now ready to join in the on-going research. We will contact you every 6 months in January and July with an email link to the online Webquest. Depending on when you signed up, it may be a few months before you receive your first email with the Webquest link.
  7. If you use a service like Yahoo, AOL, Earthlink or other web-based email services, please add webquest@arthritis-research.org to your e-mail address book. Doing so will let your service know that we are not sending you spam. Thanks!

 

 

If you have rheumatoid arthritis, osteoarthritis, or any other rheumatic disease, you can help! The National Data Bank for Rheumatic Diseases (NDB) is conducting research into treatments and results of treatments experienced by people with rheumatoid arthritis, osteoarthritis and all other rheumatic diseases. We need your in researching these important issues.

Please note that enrolling may take up to 30 minutes.

Who is the NDB and what is our Mission?

The National Data Bank for Rheumatic Diseases is a world-renowned, non-profit, independent research group. Our mission is to improve rheumatic disorder outcomes and care by providing research information to doctors and to people with arthritis, fibromyalgia, lupus, or other related problems. The NDB has published numerous articles in reputable medical journals. Every six months more than 10,000 people contribute to this important research by volunteering approximately an hour of their time to answer questions about their condition and how it affects their lives. This is done online using our online Webquest system, or by completing paper questionnaires that we send in the mail.

By participating in the NDB you'll be making a very important contribution to the treatment of rheumatic diseases.  Patients who enroll not only are the foundation of the data base, but also have a voice in the research too - from scientific advisory boards, to suggestions on research questions and projects.  Patients continually play an important part in improving the NDB and forwarding research in the field.  We can't do it without your support!