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.
Disclaimer
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This is a summary of
the original study
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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.
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.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Cohen Children's Medical Center of NY
RECRUITINGNew Hyde Park, New York, 11040, United States
Contact
Contact Phone: •••-•••-•••• Email: •••••@•••••
Contact