Other Projects
Current Projects
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 or mails the questionnaires to the NDB. Faxed questionnaires are processed by NDB's fax 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.
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
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.