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New toolkit aims to end sickle cell trait disclosure gap

NCT ID NCT05387564

First seen Jan 08, 2026 · Last updated Jun 23, 2026 · Updated 31 times

Summary

This study tested a toolkit to help pediatric doctors document and discuss sickle cell trait results found during routine newborn screening. Researchers worked with 114 healthcare providers to see if the toolkit made it easier to share this information with families. The goal is to close a known gap where many people never learn their sickle cell trait status, despite being screened at birth.

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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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Contacts and locations

Locations

  • Nemours Children's Hospital, Delware

    Wilmington, Delaware, 19803, United States

What this could mean

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

Active substance

SCT Documentation and Disclosure Toolkit (behavioral intervention)

What this could lead to

If successful, this toolkit could help more families learn their child's sickle cell trait status early, enabling informed health decisions.

What could go wrong

This is a small, completed implementation study focused on provider behavior, not a treatment trial. Results may not apply to all clinics or guarantee long-term disclosure.

Conditions

The condition(s) this trial relates to.

Sickle Cell Trait

As listed by the trial registrant

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