New registry aims to unlock secrets of rare anemia

NCT ID NCT00106015

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is building a large database of people with Diamond Blackfan anemia, a rare inherited bone marrow condition that causes anemia. Researchers will collect medical information from up to 900 participants to better understand how the disease develops and progresses. The goal is to improve knowledge and eventually find better ways to diagnose and treat this condition.

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 registry could help researchers better understand Diamond Blackfan anemia and guide future treatments.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly test any therapy or provide immediate benefits to participants.

This is an AI summary of the original study and may miss details. Read our disclaimer.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

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

Contacts and locations

Locations

  • Cohen Children's Medical Center of NY

    RECRUITING

    New Hyde Park, New York, 11040, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.