Erythropoietic protoporphyria: time to prodrome, the warning signal to exit sun exposure without pain-a patient-reported outcome efficacy measure.

Wensink D, Langendonk JG, Overbey JR, Balwani M, Van Broekhoven EJE, Wagenmakers MAEM, Wilson JHP, Wheeden K, Naik H, Desnick RJ

Genetics in medicine : official journal of the American College of Medical Genetics3 May 2021Cited by 15 (Europe PMC)

PMID33941881DOI10.1038/s41436-021-01176-zPepBankPUB-33941881

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Summary

The text of this summary is not shown here, because the article license does not allow reuse. Read it at the source (opens in a new tab)

Text rights: Publisher copyright. Results still quote short attributed sentences.

Results from this study5

5 results from studies that gave the peptide. 5 results from people.

01HumanObservational studyEfficacy outcome
In US and Dutch patients with erythropoietic protoporphyria, time to prodrome was significantly longer during afamelanotide treatment than before treatment (p < 0.0001).
In plain wordsIn people with EPP in two cohorts, the time before the first warning sensation in sunlight was longer during afamelanotide than before treatment.
Peptide
Melanotan I (afamelanotide)
Outcome
IncreaseTime to prodrome (TTP) in direct sunlight
Study
n = 89
Comparator
Before afamelanotide treatment
Outcome group
Photosensitivity and sun tolerance · Skin and wound
Studied dose
Dose not stated
Source sentences
Summary
In both studies, patients' TTP's were significantly longer during afamelanotide treatment (p < 0.0001).
1 context sentence(design, population, supporting numbers)
Summary · context
Thirty-one US and 58 Dutch EPP patients participated.
Report a problemFND-3394188101
02HumanObservational studyEfficacy outcome
Among Dutch patients with erythropoietic protoporphyria, 81% improved their time to prodrome during afamelanotide treatment.
In plain wordsIn Dutch people with EPP, 81% had a longer time before the first warning sensation in sunlight during afamelanotide.
Peptide
Melanotan I (afamelanotide)
Outcome
IncreaseDutch patients with improved TTP
Study
n = 58
Comparator
Before afamelanotide treatment
Outcome group
Photosensitivity and sun tolerance · Skin and wound
Studied dose
Dose not stated
Measurements
patients with improved TTP
81%
Dutch cohort
Source sentences
Summary
Among Dutch patients 81% improved; only 10.3% reported TTPs < 10 minutes.
1 context sentence(design, population, supporting numbers)
Summary · context
Structured interviews recorded TTP before and during afamelanotide treatment in retrospective US and Dutch cohort studies.
Report a problemFND-3394188104
03HumanObservational studyEfficacy outcome
Among Dutch patients with erythropoietic protoporphyria, 10.3% reported a time to prodrome under 10 minutes during afamelanotide treatment.
In plain wordsIn Dutch people with EPP, 10.3% still reported a warning sensation within 10 minutes of sun exposure during afamelanotide.
Peptide
Melanotan I (afamelanotide)
Outcome
DecreaseDutch patients with TTP under 10 minutes during treatment
Study
n = 58
Comparator
Before afamelanotide treatment
Outcome group
Photosensitivity and sun tolerance · Skin and wound
Studied dose
Dose not stated
Measurements
patients with TTP <10 minutes
10.3%
Dutch cohort, during treatment
Source sentences
Summary
Among Dutch patients 81% improved; only 10.3% reported TTPs < 10 minutes.
1 context sentence(design, population, supporting numbers)
Summary · context
Structured interviews recorded TTP before and during afamelanotide treatment in retrospective US and Dutch cohort studies.
Report a problemFND-3394188105
04HumanObservational studyEfficacy outcome
In US patients with erythropoietic protoporphyria, time to prodrome increased in all patients during afamelanotide treatment.
In plain wordsIn US people with EPP, the time before the first warning sensation in sunlight increased for every patient during afamelanotide.
Peptide
Melanotan I (afamelanotide)
Outcome
IncreaseUS patients with increased TTP
Study
n = 31
Comparator
Before afamelanotide treatment
Outcome group
Photosensitivity and sun tolerance · Skin and wound
Studied dose
Dose not stated
Source sentences
Summary
All US patients' TTP increased
1 context sentence(design, population, supporting numbers)
Summary · context
Structured interviews recorded TTP before and during afamelanotide treatment in retrospective US and Dutch cohort studies.
Report a problemFND-3394188102
05HumanObservational studyEfficacy outcome
In US patients with erythropoietic protoporphyria, no patient had a time to prodrome under 10 minutes during afamelanotide treatment.
In plain wordsIn US people with EPP, no patient reported a warning sensation within 10 minutes of sun exposure during afamelanotide.
Peptide
Melanotan I (afamelanotide)
Outcome
DecreaseUS patients with TTP under 10 minutes during treatment
Study
n = 31
Comparator
Before afamelanotide treatment
Outcome group
Photosensitivity and sun tolerance · Skin and wound
Studied dose
Dose not stated
Source sentences
Summary
no TTP was <10 minutes.
1 context sentence(design, population, supporting numbers)
Summary · context
Structured interviews recorded TTP before and during afamelanotide treatment in retrospective US and Dutch cohort studies.
Report a problemFND-3394188103

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Version history

PepBank keeps every version of the data on this study. Status changes from Retraction Watch, Europe PMC and Crossref are listed with their source.

Version 2Current
13 Oct 2026, 21:44 UTC
Study results updated
Version 1
13 Oct 2026, 16:31 UTC
First added · source update from Europe PMC

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