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AI app aims to catch deadly skin cancer early in rare disease patients

NCT ID NCT05843994

Diagnosis Sponsor: Northwestern University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
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 This study
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is developing an artificial intelligence app to detect squamous cell carcinoma (a type of skin cancer) in people with recessive dystrophic epidermolysis bullosa (RDEB), a rare genetic blistering condition. Twenty adults with RDEB and a history of skin cancer will submit photos of their skin through an online survey. The goal is to train the AI to recognize cancer from patient-taken photos, which could eventually lead to a home-use app for early detection.

What this could mean

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

Active substance
online survey and photograph submission
What this could lead to
If successful, this could lead to a home-use app that helps patients and doctors spot skin cancer early, improving outcomes.
What could go wrong
This is an early-stage study with only 20 participants, and the AI may not work as well on real-world photos as it does on professional images.

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

20 people

The number who actually took part.

Started

Jan 2023

Expected to finish

Nov 2028

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

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

Who is studied

Patients with RDEB worldwide are invited to participate in this virtual research to contribute photographs of their SCCs. To participate in this study, please follow this link: https://redcap.nubic.northwestern.edu/redcap/surveys/?s=JH9LHR4CC4R4H3HN

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: * patient with recessive dystrophic epidermolysis bullosa * patient with history of cutaneous squamous cell carcinoma * patient consent for upload and use of clinical data and photographs Exclusion Criteria: * Patients who do not agree to upload and use of photographs and clinical data

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Conditions

The condition(s) this trial relates to.

Congenital Abnormalities epidermolysis bullosa epidermolysis bullosa dystrophica hereditary disease hereditary skin disorder recessive dystrophic epidermolysis bullosa Skin Abnormalities skin disorder skin neoplasm skin squamous cell carcinoma squamous cell carcinoma vesiculobullous skin disease

As listed by the trial registrant

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

Epidermolysis bullosa dystrophica

Contacts and locations

Locations

  • Department of Dermatology, Northwestern University Feinberg School of Medicine and Lurie Children's Hospital

    Chicago, Illinois, 60611, United States

More trials for these conditions

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