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research

How to Find a Disease Specialist

Locate healthcare providers and researchers who have knowledge of your condition.

Tips for the Undiagnosed

Navigate the process of trying to obtain a diagnosis.

Get Involved in Research

Get Involved in Research

Learn more about how to find and participate in a research study, clinical trial, or patient registry.

Clinical Trials

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.

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.

Cancer.gov: Clinical Trials

Information about clinical trials relating to cancer research.

CenterWatch World

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

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.

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Patient Registries

Informed Consent Models/Templates

In December 2010, ORDR sponsored the Informed Consent Models/Templates for Rare Disease Registries Linked to Biorepositories meeting. Based on input from this meeting, ORDR has published recommendations for patient consent when participating in registries that are associated with biorepositories. In addition, to assist the rare disease community, the ORDR has developed a template for an informed consent form for participating in a patient registry. This template can be modified according to the specific needs of each registry.

Global Rare Diseases Patient Registry and Data Repository (GRDR)

A pilot project to establish a data repository of de-identified patient data, aggregated in a standardized manner, to enable analyses across many rare diseases and to facilitate various research projects, clinical studies, and clinical trials.

AHRQ Registry of Patient Registries (RoPR)

The Agency for Healthcare Research and Quality has created a database of patient registries to promote collaboration, reduce redundancy, and improve transparency.

ResearchMatch

A free national research registry designed to bring together patients, healthy volunteers and researchers. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Advancing Translational Sciences.

Rare Diseases Human Biospecimens/Biorepositories (RD-HuB)

A searchable database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe.

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Information on Patient Participation

FDA's Patient Representative Program

Provides information on ways that patient advocates can bring their voice to drug and device approval and safety.

ClinicalTrials.gov: About Clinical Studies

A brief introduction to clinical research, including types of studies and what happens during a study.

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Information for 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 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).

Centers for Disease Control and Prevention's National Office of Public Health Genomics

Provides updated information on how human genomic discoveries can be used to improve health and prevent disease and provides links to CDC- wide activities in public health genomics.

CDC Laboratory Practice Evaluation and Genomics Branch (LPEGB)

The Laboratory Practice Evaluation and Genomics Branch (LPEGB) seeks to improve the public's health through continuous improvement in laboratory practice in human genetic testing. This site has information on various issues related to laboratory genetic testing.

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