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Research & Clinical Trials

Links to Federal and non-federal information about research into rare diseases including ORDR-supported research. When you enter most of the Web sites listed below, you will leave the ORDR Web site. Please return to find more information about research resources, scientific conferences, genetics information and services, and other related information.

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ClinicalTrials.gov
A comprehensive database of current information about clinical research studies.

Clinical Center Clinical Trials
Search the collection of research studies being conducted at the NIH Clinical Center.

The Rare Diseases Clinical Research Network
A clinical research network supported by NIH Institutes and Centers and the ORDR.

Undiagnosed Diseases Program
The Undiagnosed Diseases Program provides answers to patients with mysterious conditions that have long eluded diagnosis and advanced medical knowledge about rare and common diseases.

Therapeutics for Rare and Neglected Diseases Program
TRND is a collaborative drug discovery and development program with governance and oversight provided by ORDR. Program operations will be within the intramural research program adjacent to the NIH Chemical Genomics Center (NCGC) and will be administered by the National Human Genome Research Institute (NHGRI).

Bench-to-Bedside Awards
Rare diseases bench-to-bedside medical research projects designed to speed translation of promising laboratory discoveries into new medical treatments.

NIH Clinical Research Trials and You
This site provides basic information about participating in clinical trials, including several first-hand accounts from trial participants and parents who have enrolled their children in trials, and features videos from researchers explaining the purposes and importance of clinical trials. The site also provides links to such resources as ClinicalTrials.gov, which can help patients find trials they may be interested in joining, and the ResearchMatch, an NIH initiative that matches volunteers and researchers.

NIH Research Portfolio Online Reporting Tool Expenditure & Results (RePORTER)
A searchable database of federally funded biomedical research projects conducted at universities, hospitals, and research institutions.

Patient Registries
Patient registries are databases where patient information, including medical information and family history, is collected and stored in a standardized and secure way. Most often the aggregated data is used for medical research, epidemiologic or other research studies. Registries can be used to recruit patients for clinical trials to learn about a particular disease or condition; to develop therapeutics or to learn about population behavior patterns and their association with disease development; developing research hypotheses; or for improving and monitoring the quality of health care.

Federal Resources

Office for Human Research Protections (OHRP)
Supports, strengthens, and provides leadership to the nation's system for protecting participants in research that is conducted or supported by the U.S. Department of Health and Human Services (HHS).

NIH Genetic Modification Clinical Research Information System (GeMCRIS)
Provides access to information about human gene transfer trials registered with the National Institutes of Health (NIH), including medical conditions under study, institutions where trials are being conducted, investigators carrying out these trials, gene products being used, route of gene product delivery, and summaries of study protocols.

Cancer.gov: Clinical Trials
Information about clinical trials relating to cancer research.

Collaborating with NIH Intramural Investigators at the Clinical Center
The National Institutes of Health is taking steps to expand engagement with extramural investigators interested in collaborating with intramural researchers to use the unique resources of the NIH Clinical Center.

NIH Clinical Research Trials and You
This site provides basic information about participating in clinical trials, including several first-hand accounts from trial participants and parents who have enrolled their children in trials, and features videos from researchers explaining the purposes and importance of clinical trials. The site also provides links to such resources as ClinicalTrials.gov, which can help patients find trials they may be interested in joining, and the ResearchMatch, an NIH initiative that matches volunteers and researchers.

NIH Office of Biotechnology Activities
Monitors human genetics research including ethical, legal, and social concerns and develops and implements NIH policies and procedures for the safe conduct of recombinant DNA activities and human gene transfer.

Office of Orphan Products Development, FDA
Promotes the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions.

Therapeutics for Rare and Neglected Diseases Program
TRND is a collaborative drug discovery and development program with governance and oversight provided by ORDR. Program operations will be within the intramural research program adjacent to the NIH Chemical Genomics Center (NCGC) and will be administered by the National Human Genome Research Institute (NHGRI).

Non-Federal Resource

CenterWatch World
Provides international listings of ongoing clinical trials and profiles of research centers and clinical trials service providers.





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