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Observational Study of Advanced Data Analytics in Genetic Conditions

This study aims to gather health information from people with genetic conditions to help researchers develop better tools for understanding these conditions. There isn't a specific drug or intervention being tested. Instead, researchers will collect medical and genetic data from many people to improve how they analyze and understand genetic information. You can join if you are known or suspected to have a genetic condition, or if a family member does. The goal is to gain new insights into the causes and effects of genetic diseases by using advanced computer analysis of this data. The study is looking to enroll about 1250 participants.

Study design
This is an observational study, meaning researchers will collect information without giving any specific treatments. It plans to include about 1250 participants.
What's involved
Participants will come to the clinic for up to 4 days.
Compensation
Not stated in the trial record.
Follow-up
Natural history is measured on an ongoing basis.

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NCT05657405

Observational Study of Advanced Data Analytics in Genetic Conditions

Recruiting
Not specifiedAges 1+Observational
National Human Genome Research Institute (NHGRI)
~1,250 participants
Updated 2026-08-18 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Natural History
Measured over Ongoing

Conditions

Genetic Conditions

Explore related trials

Genetic Disorder

Where it's being run

1 sites across 1 states
Maryland1

Study leadership

  • Benjamin D Solomon, M.D. · PRINCIPAL_INVESTIGATOR · National Human Genome Research Institute (NHGRI)

Who to contact

Rebekah L Waikel
[email protected]
(301) 435-6558
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Stated willingness to comply with all study procedures and availability for the duration of the study
Male or female, from age 0 to over 100 years of age (the NIH Clinical Center's age-based eligibility criteria will be followed for any individuals who come to the Clinical Center for participation such that individuals \<3 years of age will have a screening form submitted to the Pediatrics consult service, and admissions will follow current Clinical Center limits based on age such that admissions to 1NW generally have to be \> 2 years of age)
Either:
A person who is known or suspected to have a genetic condition based on medical and/or family history
A person who is a family member of a person known or suspected to have a genetic condition (and who is themselves not known or suspected to have a genetic condition)
Ability of subject (or Legally Authorized Representative \[LAR\], who can provide evidence of this status, as described above) to understand and the willingness to sign a written informed consent document.
Stated willingness to comply with all study procedures and availability for the duration of the study
Either:
A person over 18 years of age who is known to have a genetic condition based on medical and/or family history
A parent or guardian of a person known to have a genetic condition (and who is themselves not known or suspected to have a genetic condition)
Ability of subject (or Legally Authorized Representative \[LAR\], who can provide evidence of this status, as described above) to understand and the willingness to sign a written informed consent document.

What this trial measures

  • Natural HistoryOngoing

    To collect, collate, and analyze datasets relevant to genetic conditions using advanced computational approaches, with the objective of developing and iterating novel methods that can efficiently and accurately parse diverse, complex datasets related to genetic conditions to reveal novel clinical and biological insights