Study on Data Collection for Genetic Conditions

Observational Study of Advanced Data Analytics in Genetic Conditions

Recruiting Observational Study
Genetic Conditions
No Placebo Group Every participant receives an active treatment — no one gets a placebo. Healthy Volunteers Welcome You do not need to have the condition being studied to take part. No Study Drug Researchers observe your health over time — no experimental treatment is given.
Ready to participate?

Review the details below, then apply to join this clinical trial.

At a Glance
Age
1 Day – 120
Sex
Any
Study type
Observational
Participants needed
1,250 (estimated)
Sponsor
National Human Genome Research Institute (NHGRI) · NIH
Who this trial is looking for

This trial is looking for people with genetic conditions or those with a family member who has such a condition. Participants will visit a clinic for up to 4 days to provide health and genetic information through tests and scans.

Are You a Good Fit for This Trial?

You may be able to join if

  • I am known or suspected to have a genetic condition
  • I have a family member with a known or suspected genetic condition
  • I can provide consent or have a legally authorized representative who can

You may not be able to join if

  • I am pregnant
  • I am unable or unwilling to participate
  • I am medically unstable
  • I reside in a hospital

Summarized in plain language from this trial's official eligibility criteria. The full criteria are further down this page — only the research team can confirm whether you qualify.

Think this trial could be right for you?

Answer a few quick questions to see if you may meet the eligibility requirements.

Check Your Eligibility
About This Trial
Background: The genes a person is born with can sometimes cause serious diseases. Genetic diseases are rare, but they can have a big impact on the people they affect. Researchers have already made great strides in understanding how some genes cause disease. But they would like to have even better tools to analyze and understand genetic data. To create these new tools, they need to gather health a…
Trial Locations
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Eligibility Criteria
* INCLUSION CRITERIA: To be eligible to participate in the website-based data collection portion, individuals must be known or suspected to have a genetic condition, or to be the relative of a person with a known or suspected genetic condition, and be willing to consent to and share the requested i…
Contacts

Rebekah L Waikel

(301) 435-6558

rebekah.waikel@nih.gov

CONTACT

Benjamin D Solomon, M.D.

(301) 402-8824

solomonb@mail.nih.gov

CONTACT