These professionals can be a helpful source for identifying an expert for a specific disease. Frequently, researchers conducting clinical trials are medical doctors who may also see patients who are not enrolled in a study. These physicians may also provide a referral to a colleague who sees patients for a specific disease.
The following organizations and websites are useful in locating medical researchers who may be helpful:
The Rare Diseases Clinical Research Network (RDCRN) comprises 22 distinctive consortia working to improve the availability of rare disease information, treatment, clinical studies, and general awareness for patients and the medical community. The RDCRN is focused on providing up-to-date information for patients and connecting them with advocacy groups, expert doctors, and clinical research opportunities. LEARN MORE.
The Centers for Mendelian Genomics is a research program that focuses on discovering causes of rare genetic disorders. LEARN MORE.
ClinicalTrials.gov is a website that was developed by the U.S. National Institutes of Health (NIH) through the National Library of Medicine. The purpose of the site is to provide clinicians, patients, family members, and the public with current information on clinical research studies in the U.S. This resource may be helpful in locating researchers who are studying a specific condition. A basic search can be conducted using the condition name as the search term; click on a study to review the eligibility criteria and obtain the study’s contact information. LEARN MORE.
The Patient Recruitment and Public Liaison (PRPL) Office at the NIH provides information about opportunities to participate in research conducted at the NIH Clinical Center Hospital. You may call the PRPL office toll-free at 1-800-411-1222 or send an email to firstname.lastname@example.org to ask about clinical trials being conducted for a specific disease and contact information for research involved in these trials.