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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.

Where to Start

GARD Video Tutorial: How to Get Involved in Research

A video developed by GARD Information Specialists that explains how you can find out about research for a rare disease. 

The Basics: NIH Clinical Research Trials and You

Understand the different types of studies and what to consider as you look for a study. About Clinical Studies

Learn more about clinical research, including reasons for conducting a study and what happens during a study. Clinical Trials

Find the latest clinical trial news, videos, articles, and financial aid information. 

Clinical Research Studies and You

Clinical study participation resources compiled by the National Center for Advancing Translational Sciences.

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Tools to Aid Your Search

Search for publicly and privately funded clinical studies in the United States and other countries.

NIH Clinical Center Studies

Search to find studies at the NIH Clinical Center in Bethesda, Maryland.

National Cancer Institute Clinical Trials

Find cancer clinical trial opportunities by searching this site.

NIH Research Portfolio Online Reporting Tool Expenditure & Results (RePORTER)

Use the RePORTER database to find information on all NIH-funded research activities. Some of the studies may be enrolling participants, while others involve only laboratory experiments.

Rare Diseases Clinical Research Network (RDCRN)

Find out if your condition is currently being studied by the RDCRN. The RDCRN aims to develop new treatments, deepen knowledge, raise awareness, and direct patients to services. It is assisted by the efforts of researchers, doctors, and patient groups.

Therapeutics for Rare and Neglected Diseases (TRND)

TRND aims to encourage and speed the development of new drugs for rare and neglected diseases. Visit the TRND Web page to view current studies. 


Find clinical trials and research studies in Europe by searching the Orphanet Web site, a portal for rare diseases and orphan drugs.

CenterWatch World

Search to find international clinical trials and research center profiles.

NIH Genetic Modification Clinical Research Information System (GeMCRIS)

Visit GeMCRIS to learn about human gene transfer trials registered with the NIH.

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Find Patient Registries and Biobanks

AHRQ Registry of Patient Registries (RoPR)

Use RoPR to find patient registries that collect and organize health information. These registries help researchers design new studies and find people who might want to participate. RoPR was created by the Agency for Healthcare Research and Quality.

RDCRN Contact Registry

The Rare Diseases Clinical Research Network (RDCRN) Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects. The contact registry is anonymous and free of charge.


Sign-up with ResearchMatch to receive notifications about research opportunities. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Advancing Translational Sciences. It is a free national research registry designed to bring together patients, healthy volunteers and researchers.


GenomeConnect is a patient registry that offers a secure place for you to share your deidentified genetic test results and health information with researchers, clinicians, and others. The registry aims to speed discovery regarding genetic changes and health.

Coordination of Rare Diseases at Sanford (CoRDS)

The Coordination of Rare Diseases at Sanford (CoRDS) registry is a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and for researchers to access.

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Help with Travel Costs

Travel and Lodging Assistance

Find help with the cost of travel to research centers within the United States.

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Information for Disease Advocates

Informed Consent Models/Templates

NCATS 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.

NIH/NCATS GRDR℠ Program (Global Rare Diseases Patient Registry Data Repository)

The aim of the GRDR program is to develop a Web-based resource that aggregates, secures and stores de-identified patient information from many different registries for rare diseases, all in one place.

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).

FDA's Patient Representative Program

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

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

Navigate the process of trying to obtain a diagnosis.