National Databank For Rheumatic Diseases
The National Databank (NDB) is a research databank for the purpose of studying arthritis and rheumatic conditions.
If you have been diagnosed with one or more rheumatic diseases you are eligible to participate in the National Databank for Rheumatic Diseases research. Among the rheumatic diseases being studied are:
Here is the complete list of rheumatic diseases from the NDB.
NDB Goals
The NDB project collects data on rheumatic conditions directly from persons who have these conditions. The goals of the NDB project are:
- to advance knowledge about the causes, outcomes, costs, treatments, and results of treatments related to rheumatic conditions.
- to stimulate research and study by health professionals by making NDB data available for medical research.
How Is Data Collected From Study Participants?
Initially you must enroll on the enrollment page. Once you are enrolled, you will be contacted by postal mail and asked to sign a consent form for participation. You will also be asked to provide your doctor's name and address so that your diagnosis can be verified. After your diagnosis is verified, you will receive a special questionnaire to obtain some background information and then a research questionnaire in the mail about every 6 months along with the NDB newsletter.
Each questionnaire takes approximately 30 to 60 minutes to complete.
If you wish to receive and fill out your questionnaire online as opposed to being sent the paper questionnaire, you can sign up for WebQuest (the online questionnaire). You will receive an email with instructions on how to complete questionnaires on the Web and a personalized link that allows only you to participate.
Why Should You Participate In The National Databank For Rheumatic Diseases Research Project?
People usually participate because they believe it is important to contribute to medical research. Sometimes it can be difficult for people with debilitating and chronic conditions to participate in research in traditional settings. The NDB project provides an easy-to-use format which allows you to share your experience, giving researchers information intended to help improve treatments for rheumatic diseases and improve the quality of life for people living with rheumatic disease.
There are over 10,000 participants in the NDB project. Since everyone's experience is unique, everyone's participation is equally important, including your participation.
What About Privacy Issues?
Only the research staff sees your questionnaire to check that it is complete and check your name and address for mailing purposes. Once you are in the Databank, your name is removed for research purposes, meaning any researcher using the Databank for medical research cannot identify you.
Names are not given or sold to anyone else. The confidentiality of research participants is assured.
What Type Of Questions Are Asked On The NDB Questionnaire?
The NDB questionnaire includes questions about a variety of issues related to rheumatic disease including:
- pain
- functional ability
- work ability
- disability
- affected joints
- symptoms
- treatments, including medications and surgery
- side effects of treatments
- managing your illness
Who Is The Project Director?
Dr. Frederick Wolfe is the project director. Dr. Wolfe is a rheumatologist and winner of the American College of Rheumatology Distinguished Rheumatologist Award. Dr. Wolfe also has been designated as a "Master of the American College of Rheumatology". More than 800 rheumatologists across the United States have helped with this research project.
It is easy to understand why researchers and rheumatologists would be eager to hear directly from patients about the effectiveness of a particular treatment, or conversely, how a person is limited by their condition. The future of arthritis research could be helped, in part, by your personal contribution. Consider participating in the NDB project. For more information, go to the Arthritis Research Center Foundation.