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Massive study aims to uncover cancer secrets in rare bone marrow diseases

NCT ID NCT00027274

Recruiting now Knowledge-focused Sponsor: National Cancer Institute (NCI) Source: ClinicalTrials.gov ↗

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This natural history study follows up to 4,000 people with inherited bone marrow failure syndromes (IBMFS) and their families to learn why they are prone to certain cancers. Researchers will track health over time, collect genetic samples, and look for clues that separate those who develop cancer from those who don't. The goal is to improve cancer screening and prevention for these high-risk groups.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this study could identify genetic and environmental factors that increase cancer risk in these families, pointing toward better screening and prevention strategies.

What could go wrong

This is an observational study, not a treatment trial. It may take many years to gather enough data, and findings may not apply to the general population.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

aplastic anemia bone marrow failure syndrome congenital amegakaryocytic thrombocytopenia Congenital Bone Marrow Failure Syndromes Diamond-Blackfan anemia dyskeratosis congenita Fanconi anemia inherited aplastic anemia Pearson syndrome severe congenital neutropenia Shwachman-Diamond syndrome thrombocytopenia-absent radius syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

DIAMOND-BLACKFAN ANEMIA DYSKERATOSIS CONGENITA FANCONI ANEMIA INHERITED BONE MARROW FAILURE SYNDROME, APLASTIC ANEMIA SHWACHMAN DIAMOND SYNDROME

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • National Cancer Institute - Shady Grove

    RECRUITING

    Rockville, Maryland, 20850, United States

  • National Institutes of Health Clinical Center

    RECRUITING

    Bethesda, Maryland, 20892, United States