New registry tracks rare skin and brain condition worldwide
NCT ID NCT04548817
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study is a registry that gathers medical information from up to 100 people who have either large dark skin patches present at birth or a rare brain condition called neurocutaneous melanocytosis. The goal is to collect data on how these conditions are treated and how they progress over time. No new treatments are being tested—only standard care information is recorded.
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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: •••••@•••••
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
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Boston Children's Hospital (Data Analysis Only)
NOT_YET_RECRUITINGBoston, Massachusetts, 02115, United States
Contact Phone: •••-•••-••••
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Memorial Sloan Kettering Cancer Center (All Protocol Activities)
RECRUITINGNew York, New York, 10065, United States
Contact Phone: •••-•••-••••