Skip to main content
U.S. Department of Health & Human Services
National Institutes of Health
NCATS
National Center for Advancing and Translational Sciences National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences
1-888-205-2311
Menu Search
1-888-205-2311
Menu
  • Home
  • Diseases expand submenu for Diseases
    • Browse A-Z
    • Find Diseases By Category expand submenu for Find Diseases By Category
      • Autoimmune / Autoinflammatory diseases
      • Bacterial infections
      • Behavioral and mental disorders
      • Blood Diseases
      • Chromosome Disorders
      • Congenital and Genetic Diseases
      • Connective tissue diseases
      • Digestive Diseases
      • Ear, Nose, and Throat Diseases
      • Endocrine Diseases
      • Environmental Diseases
      • Eye diseases
      • Female Reproductive Diseases
      • Fungal infections
      • Heart Diseases
      • Hereditary Cancer Syndromes
      • Immune System Diseases
      • Kidney and Urinary Diseases
      • Lung Diseases
      • Male Reproductive Diseases
      • Metabolic disorders
      • Mouth Diseases
      • Musculoskeletal Diseases
      • Myelodysplastic Syndromes
      • Nervous System Diseases
      • Newborn Screening
      • Nutritional diseases
      • Parasitic diseases
      • Rare Cancers
      • RDCRN
      • Skin Diseases
      • Viral infections
    • List of FDA Orphan Drugs
    • GARD Information Navigator
    • FAQs About Rare Diseases
  • Guides expand submenu for Guides
    • Patients, Families and Friends expand submenu for Patients, Families and Friends
      • How to Find a Disease Specialist
      • Tips for the Undiagnosed
      • Support for Patients and Families
      • Tips for Finding Financial Aid
      • Help with Travel Costs
      • How to Get Involved in Research
      • FAQs About Chromosome Disorders
      • Medical and Science Glossaries
    • Healthcare Professionals expand submenu for Healthcare Professionals
      • Caring for Your Patient with a Rare Disease
      • ICD Coding for Rare Diseases
    • Researchers expand submenu for Researchers
      • Finding Funding Opportunities
    • Teachers and Students expand submenu for Teachers and Students
      • Teaching Resources
      • K's Korner
  • News expand submenu for News
    • In The Spotlight
    • News Archive
    • Connect with GARD
    • Media Requests
  • About GARD expand submenu for About GARD
    • Contact GARD
    • About GARD
    • Videos
    • Brochures and Publications
  • En Español expand submenu for En Español
    • Enfermedades
    • Contacte GARD
    • Guías de Información expand submenu for Guías de Información
      • Preguntas Más Frecuentes Sobre Enfermedades Raras
      • Como Encontrar un Especialista en su Enfermedad
      • Consejos Para una Condición no Diagnosticada
      • Ayuda para Pacientes y Familias
      • Ayuda Financiera para Mi Enfermedad
      • Participe en Estudios de Investigación
      • Preguntas Más Frecuentes Sobre los Trastornos Cromosómicos
    • Sobre GARD
  • Home
© Positive Exposure
banner showing people with disabilities and/or their relatives
  1. Home
  2. Guides
  3. Patients, Families and Friends
  4. How to Get Involved in Research
print
  • Patients, Families and Friends expand submenu for Patients, Families and Friends
    • How to Find a Disease Specialist
    • Tips for the Undiagnosed
    • Support for Patients and Families
    • Tips for Finding Financial Aid
    • Help with Travel Costs
    • How to Get Involved in Research
    • FAQs About Chromosome Disorders
    • Medical and Science Glossaries
  • Healthcare Professionals expand submenu for Healthcare Professionals
    • Caring for Your Patient with a Rare Disease
    • ICD Coding for Rare Diseases
  • Researchers expand submenu for Researchers
    • Finding Funding Opportunities
  • Teachers and Students expand submenu for Teachers and Students
    • Teaching Resources
    • K's Korner

How to Get Involved in Research


En Español
Listen

How to Get Involved in Research




Reports about clinical research study results are often in the news, but it can be difficult to find out about studies that are in progress. If you or a loved one has a rare condition, you may be interested in participating in a research study. This guide can help you find current research studies.


Where can I learn about clinical research studies?
A good place to start is on the National Institutes of Health (NIH) resource page, The Basics: NIH Clinical Research Trials and You. This article will help you understand the different types of studies and the process of informed consent. It also explains what to consider as you look for a study. More information on participating in research can be found at the following sites:
  • GARD Video Tutorial: How to Get Involved in Research
  • ClinicalTrials.gov: About Clinical Studies
  • MedlinePlus.gov: Clinical Trials


How can I find a clinical research study for a rare disease?

The following websites are a great place to look for studies. Start your search using the name of your condition. If you don’t find studies, try using a different name for your condition. You can also search using words that describe the condition, such as “inflammatory skin” or “genetic neuromuscular.”  If you aren’t sure which search terms to use, try using words that you see when you read about your condition. You can also search for a type of treatment, like “stem cell” or “gene therapy.”

  • ClinicalTrials.gov is an NIH website that has information on publicly and privately funded clinical studies in the United States and other countries.

  • The NIH Clinical Research Study website will help you find research opportunities at the NIH in Bethesda, Maryland.

  • The Rare Diseases Clinical Research Network (RDCRN) is made up of 22 research consortia to advance medical research on rare diseases. This network of physician scientists and their multidisciplinary teams work with patient advocacy groups to study more than 200 rare diseases at sites across the United States. This initiative is funded by the National Center for Advancing Translational Sciences (NCATS) at the NIH.

  • NIH Genetic Modification Clinical Research Information System (GeMCRIS) is a searchable database of human gene transfer trials registered with the NIH. You can search the database by medical condition.

  • The National Cancer Institute Clinical Trials tool can help you search for clinical trials enrolling people with rare and inherited cancers.

  • The Centers for Mendelian Genomics is an NIH-funded research effort to find the causes of rare genetic disorders. To participate, ask your healthcare professional to contact the Center at gmendel@mendelian.org.

  • Orphanet is a European database for rare diseases and is a resource for learning about clinical trials and research studies.

  • CenterWatch is a searchable database of domestic and international clinical trials and research center profiles.

In addition to these sites, we suggest that you contact advocacy groups to learn more about research. Check the GARD disease pages to see if organizations are listed for your condition. If you cannot find studies after searching these sites, please contact a GARD Information Specialist.



Will I have to travel to participate in a clinical research study?

Some studies require participants to travel to a research center for evaluation or treatment. Other studies involve completing surveys or collecting a sample that can be sent through the mail.

See our guide called Help with Travel Costs for resources that offer financial assistance for transportation and lodging.



How can I learn about future studies?

You can sign up to receive alerts about new research studies at many of the resources listed above. Another option is to join a patient registry where you can provide your contact information and details about your health. Patient registries help researchers plan new studies and find people who might want to participate. They are important for research because it can be difficult for researchers to find participants with rare diseases.



Where can I find a patient registry for a rare disease?

Start your search by contacting support and advocacy groups. Check the GARD disease pages to see if any organizations are listed for your condition. The following tools can help you find patient registries.

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

  • The Rare Diseases Clinical Research Network (RDCRN) has a contact registry to keep you informed about RDCRN research opportunities as they become available. You can also receive updates on the progress of current research projects.

  • 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 patients and researchers to help advance treatments and cures for rare diseases.

  • The Registry of Patient Registries was created by the Agency for Healthcare Research and Quality to pool information about registry opportunities.

  • ResearchMatch is 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 NCATS at the NIH.



Can I donate tissue samples or organs for rare disease research?
A biobank or biorepository allows you to submit tissue and blood samples that can be used by researchers. Some biobanks are coordinated by researchers and others are maintained by advocacy organizations. Try the following resources when searching for a place to submit tissue samples.

  • Contact a disease advocacy organization to see if a biobank exists for your specific rare disease.

  • The National Rare Disease Biospecimen Resource is a service of the National Disease Research Interchange (NDRI). This resource provides researchers with organs, tissues, blood, and DNA or cell lines donated from people with rare diseases. For more information call 1-800-222-NDRI.

  • The Cancer Genome Atlas (TCGA) is a collaboration of researchers who use tissue donations to improve the detection, diagnosis, and treatment of cancer. To learn how to participate, your doctor can email the TCGA Program Office at tcga@mail.nih.gov. More information on tissue donation for cancer research is available through the National Cancer Institute.

  • ClinicalTrials.gov lists many opportunities for tissue donation. View a sample search for tissue banks. After you click on a tissue bank, review the "eligibility" criteria to see if it is right for you. Use the study’s contact information to learn more.

  • The Coriell Institute for Medical Research has established the Coriell Cell Repositories to provide cell lines and DNA samples to research scientists around the world. These collections are supported by funds from the NIH.

  • The Stanford Neuromuscular Biobank coordinates the collection, preservation, and sharing of samples for research on neuromuscular disorders.

  • The Brain and Tissue Bank at the University of Miami School of Medicine is an NIH NeuroBioBank, one of six designated brain and tissue biorepositories in the nation.
Last updated: 6/17/2016

Share this content:

Share this content:

twitter-icon facebook-icon contact-icon link-icons

Copy Link

Link copied to your clipboard.

printer-icon

You May Be Interested In

How to Find a Disease Specialist

How to Find a Disease Specialist

Tips for the Undiagnosed

Tips for the Undiagnosed

Support for Patients and Families

Support for Patients and Families

Tips for Finding Financial Aid

Tips for Finding Financial Aid

Help with Travel Costs

Help with Travel Costs

How to Get Involved in Research

How to Get Involved in Research

FAQs About Chromosome Disorders

FAQs About Chromosome Disorders

Medical and Science Glossaries

Medical and Science Glossaries

Caring for Your Patient with a Rare Disease

Caring for Your Patient with a Rare Disease

ICD Coding for Rare Diseases

ICD Coding for Rare Diseases

Finding Funding Opportunities

Finding Funding Opportunities

Teaching Resources

Teaching Resources

K's Korner

K's Korner

placeholder for the horizontal scroll slider Back to top
GARD Home NCATS Home Site Map Browse Glossary A-Z Privacy Notice Disclaimer Accessibility FOIA OIG

If you have problems viewing PDF files, download the latest version of Adobe Reader

For language access assistance, contact the NCATS Public Information Officer

Genetic and Rare Diseases Information Center (GARD) - PO Box 8126, Gaithersburg, MD 20898-8126 - Toll-free: 1-888-205-2311

contact gard Office of Rare Disease Research Facebook Page Office of Rare Disease Research on Twitter
Listen