EPP drug levels under the microscope: afamelanotide study completed
NCT ID NCT06388642
First seen Jun 26, 2026 · Last updated Jul 28, 2026 · Updated 3 times
Summary
This study looked at how the drug afamelanotide (Scenesse) behaves in the bodies of 28 people with erythropoietic protoporphyria (EPP), a rare condition that causes severe pain on sun exposure. Researchers measured the drug's concentration in the blood after a single implant. The goal was to understand dosing, not to test if it works.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- Active substance
- afamelanotide (Scenesse) implant
- What this could lead to
- If successful, this study could help confirm the right dosing of afamelanotide for EPP patients, potentially improving light tolerance and quality of life.
- What could go wrong
- This is an early-phase, small study (28 participants) focused on drug levels, not on effectiveness or long-term safety. Results may not apply to all EPP patients.
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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
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CLINUVEL Site
Leuven, Belgium
-
CLINUVEL Site
Rotterdam, Netherlands
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Other studies related to the condition(s) this trial covers.