View public interest information about VICTR, the CTSA and public resources

Vanderbilt is proud to provide an on-line service, “ResearchMatch,” a not-for-profit effort that will help match people who would like to participate in research with researchers nationwide via a secure and convenient online web portal. www.researchmatch.org
Volunteers of any age, race, ethnicity or health status are invited to join.

Vanderbilt’s Office of Rare Disorders

The goal of the Office of Rare Disorders at Vanderbilt is to provide a focal point for all Vanderbilt physicians, scientists, and clinical and translational investigators whose scientific and clinical practice entails caring for patients with rare disorders, and investigators seeking to discover the pathophysiology and treatment of these illnesses. 

Background

In 1990, Vanderbilt University recognized the importance of a systematic approach to addressing the needs of individuals with rare disorders, in terms of patient care, research, and education.  In order to carry out this mission, Vanderbilt’s Clinical Research Center (CRC), established, with $50,000 of local institutional funds, an Office of Rare Disorders, to create a database of rare disease protocols.  This was initially published in a book format in 1991, GCRC Rare Disease Protocol Database. In 1994, this database was placed on the website of the Vanderbilt GCRC.  Public interest in the database began to be more pronounced, and increasingly patients or families of patients with rare disorders began to work through this database to identify potential sources of therapy and opportunities to participate in clinical research relevant to their disorder. Recognizing the success of this effort, Dr. Inese Beitins, then Director of the national GCRC program in Bethesda, adopted many aspects of Vanderbilt's program in setting up a formal Office of Rare Disorders within the National Center for Research Resources (NCRR). Vanderbilt shared its material and technology with Drs. Beitins and Vaitukaitis at NCRR. In retrospect, the five initial years of activity of this program at Vanderbilt were important in increasing local and national recognition concerning rare diseases.  The Vanderbilt Office of Rare Disorders is currently under the leadership of Lynda Lane, MS, RN and is located on the CRC.

Send in a research idea...

We welcome new research ideas. Although many behavioral and medical research ideas come from scientists and doctors, patients and consumers often have ideas too. As a patient or consumer, you may have experienced an unexpected benefit from a medicine or treatment or experienced a side effect not already described by the drugs manufacturer. Or you may have an idea that would help us help you in a more convenient or improved manner. Please submit your research ideas below.


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