Current Projects

NDB Longitudinal Observation Study:

The National Data Bank for Rheumatic Diseases is a world-renowned, non-profit, independent research group, whose 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 an extensive published research library that is fueled by over 10,000 people who every 6 months fill out questionnaires on their specific condition(s) via our online Webquest system, or by filling out questionnaiers sent by mail or by phone with a research assistant. 

Enrollment into this study includes all the studies listed below.  Physicians can also enroll their patients into the longitudinal study by having their patients complete the file found at this link:

http://www.arthritis-research.org/sites/default/files/Site Enrollment Form for NDB Longitudinal Observation Study.pdf

If you are interested in receiving Site Enrollment forms and supplies to help enroll patients into the NDB, please click here to contact the NDB.

The Arthritis Internet Registry (AIR):

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.

For more information, FAQs, and enrollment for those with RA or other rheumatic diseases: http://www.arthritis-research.org/join-research/arthritis-internet-registry

 

RAlly: The National Data Bank for Rheumatic Diseases (NDB)

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.

For more information: www.ndbrally.org

Certolizumab pegol (Cimzia®) Safety Registry

The Certolizumab pegol (Cimzia) Safety Registry is a study to obtain the safety and outcome data on rheumatoid arthritis (RA) patients who have received certolizumab pegol (Cimzia) and other RA treatments. The purpose of this study is broader than just the evaluation of certolizumab pegol, it also evaluates the safety and outcome data on other RA treatments.

For more information: www.ndbcimzia.org

Lupus in the Community (SLEC Study)

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.

ClinHAQ Faxback REPORT Project

This project utilizes a simple assessment questionnaire. Patients receive questionnaires at clinical visits and office staff faxes, mails or send online the questionnaires to the NDB. The questionnaires are processed by NDB's server, verified by research assistants, automatically scored, and the results are immediately faxed back to the physician in real-time for the purpose of clinical patient care.  Results can also be sent via mail or pdfs and/or data can be uploaded to a secure site for physicians or staff to download and incorporate into their electronic medical record system.

Spanish Language Questionnaires

The NDB expanded its research to serve the Spanish-speaking community in September 2003. Spanish language versions are available for all of our research and clinical questionnaires on the web, in interactive PDF format, or on paper. NDB Spanish Questionnaires can be customized for use in a particular country or to match a research area of interest. Please contact the NDB for more information about Spanish questionnaires.

International Resources

NDB Questionnaires are also available in International English on the web, in interactive PDF format, or on paper. NDB particpants live in dozens of countries around the world. Physicians and researchers can work with customized NDB questionnaires to answer particular research questions.

NDB Pamphlets for Support Groups and Doctors' Offices

Can you use our new pamphlet?

pamphlets

Now available for your Doctor's waiting room, support group or arthritis meetings. Our new pamphlets explain what we do and how you and can help. Each one has a postage-paid postcard to request more information or join the project. The pamphlets and a small table-top stand are available free from the NDB.

 

 

 

 

 

 

Past Projects

Rheumatoid Arthritis Evaluation Survey (RAES) Project

This project used self-assessment questionnaires and reporting forms for joint, laboratory, and physician assessment. A comprehensive clinical assessment form suitable primarily for research, it could also be shortened for combined clinical and research use. NOTE: Enrollment in this project is now closed.

CHORD Fellowship Project

The CHORD Fellowship was a sponsored program directed by Frederick Wolfe (NDB Director), Theodore Pincus (Vanderbilt University), and Hyon K. Choi (Harvard). This was a year-long fellowship training program for physicians training to be rheumatologists. The CHORD fellows studied with Drs. Wolfe, Pincus and Choi using research from the NDB. Many of the fellows submitted research results to the American College of Rheumatology annual ACR meetings.

Familial Cold Autoinflammatory Syndrome (FCAS)

The FCAS study was a three-month natural history study to support the development of a disease-specific "Daily Health Assessment Form" (DHAF). Familial cold autoinflammatory syndrome (FCAS) is a rare genetic condition caused by a mutation in the gene CIAS1. This study involved collecting daily diary information about symptoms that FCAS patients experience, and obtaining periodic blood samples to monitor variation in the amount of inflammation in FCAS patients.