Den här översättningen är inte klar ännu. Den här sidan är just nu på engelska.

Gå till den engelska sidan

Cure My Disease

Don't miss your cure!

 Log in / Sign up

New study aims to unlock mysteries of rare sun allergy disorders

NCT ID NCT07567131

Knowledge-focused Sponsor: Portal Therapeutics, Inc. Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This observational study is gathering information on how erythropoietic protoporphyria (EPP) and X-linked porphyria (XLP) affect people aged 12 and older. Over 6 months, researchers will track symptoms, light exposure, and blood levels of protoporphyrin IX (PPIX) in 50 participants. No treatment is given; the goal is to better understand these rare conditions that cause severe pain and skin reactions to sunlight.

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 study could provide better understanding of EPP and XLP, potentially guiding future treatments or management strategies.
What could go wrong
This is an observational study with no treatment given, so it won't directly improve symptoms. Results may not lead to immediate changes in care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 50 people

The number the study aims to enrol. It can still change while the study runs.

Expected to start

Apr 2026

An estimate. Start dates often move.

Expected to finish

Apr 2027

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The study design and key inclusion criteria are focused on EPP/XLP and are inclusive of all potential participants, including those from underrepresented racial and ethnic populations. The sites and countries selected have diverse populations and the potential to enroll diverse participants.

Ages

12 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. Aged 12 years and older. 2. Confirmed diagnosis of EPP or XLP as follows: 1. Genetic confirmation of EPP (FECH mutation with reduced ferrochelatase activity) OR 2. Genetic confirmation of XLP (ALAS2 gain-of-function mutation) OR 3. Elevated free PPIX levels in RBCs consistent with EPP/XLP, supported by clinical and/or family history. 3. Currently has symptoms of EPP/XLP. 4. History of consistent, non-painful prodrome within approximately 45 minutes of sunlight exposure and prior to phototoxic attacks, as self-reported by the participant. 5. Willing and able to wear a light dosimetry device during the study. 6. Willing and able to complete a daily diary of EPP/XLP symptoms. 7. Willing and able to keep skin sites chosen for provocative sunlight exposure testing covered by opaque material when outside or exposed to potentially triggering light beginning 2 days prior to testing. 8. Willing and able to provide informed consent and/or assent for the study. 9. Study participants and LAR (as appropriate) are willing and able to comply with study visits and study procedures. Exclusion Criteria: 1. Diagnosis of another porphyria or another photodermatosis that may confound the characterization of EPP/XLP. 2. Has a clinically significant disease or condition that, at the discretion of the Investigator or Sponsor, would interfere with the evaluation of EPP/XLP or study participation, or would make study participation not in the best interest of the participant. 3. Is taking, or has taken within 60 days of Day 1, any medication, vitamin, or supplement that alters sensitivity to light exposure (eg, afamelanotide, melanotan, beta carotene, dersimelagon, or bitopertin). 4. Concurrent or anticipated participation in an interventional clinical trial during the study period.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Erythropoietic protoporphyria (EPP) are added.

Vår säkerhetsrekommendation!

Genom att skicka in godkänner du våra Användarvillkor

Conditions

The condition(s) this trial relates to.

erythropoietic protoporphyria X-linked erythropoietic protoporphyria

As listed by the trial registrant

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

Erythropoietic protoporphyria (EPP) X-linked porphyria (XLP)

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    19 sites in 9 countries. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • AP-HP Hopital Bichat - Claude Bernard

    NOT_YET_RECRUITING

    Paris, France

  • Azienda Ospedaliero-Universitaria di Modena

    NOT_YET_RECRUITING

    Modena, Italy

  • Centre Hospitalier Universitaire de Bordeaux - Hopital Saint - Andre

    NOT_YET_RECRUITING

    Bordeaux, France

  • Consorcio Hospital General Universitario de Valencia

    NOT_YET_RECRUITING

    Valencia, Spain

  • Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano

    NOT_YET_RECRUITING

    Milan, Italy

  • Gazi University Faculty of Medicine

    NOT_YET_RECRUITING

    Ankara, Turkey (Türkiye)

  • Guy's Hospital

    RECRUITING

    London, United Kingdom

  • Haukeland University Hospital

    NOT_YET_RECRUITING

    Bergen, Norway

  • Hospital Universitario 12 de Octubre

    RECRUITING

    Madrid, Spain

  • Massachusetts General Hospital

    RECRUITING

    Boston, Massachusetts, 02114, United States

  • Mount Sinai School of Medicine

    RECRUITING

    New York, New York, 10029, United States

  • Ninewells Hospital

    RECRUITING

    Dundee, United Kingdom

  • Salford Royal Hospital

    RECRUITING

    Manchester, United Kingdom

  • Temple University

    NOT_YET_RECRUITING

    Philadelphia, Pennsylvania, 19121, United States

  • UZ Leuven

    NOT_YET_RECRUITING

    Leuven, Belgium

  • University Hospital of Wales

    RECRUITING

    Cardiff, United Kingdom

  • University of Alberta Hospital

    NOT_YET_RECRUITING

    Edmonton, Canada

  • University of Texas Health - Ertan Digestive Disease Center

    RECRUITING

    Houston, Texas, 77030, United States

  • Wake Forest University Baptist Health - Dept of Gastroenterology

    RECRUITING

    Wake Forest, North Carolina, 27587, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.