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500-Patient study aims to unravel mysteries of rare immune diseases

NCT ID NCT07040774

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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Sep 11, 2026 · Updated 3 times

Summary

This study follows 500 children and adults with rare genetic disorders called type I interferonopathies, which cause severe inflammation and neurological problems. Researchers will track how the disease progresses over time and look for biological markers to improve diagnosis and guide future treatments. The goal is to better understand these conditions and prepare for more effective clinical trials.

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 identify biomarkers and patient subgroups, paving the way for tailored treatments and better-designed future clinical trials.
What could go wrong
This is an observational study, not a treatment trial. It will not directly test any therapy, and results may take years to impact patient 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 500 people

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

Started

Oct 2025

Expected to finish

Oct 2045

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 genetically confirmed type I interferonopathy in Europe. 500 patients estimated.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Genetically confirmed patient with type I interferonopathy * Patient affiliated to a social security scheme or beneficiary of such a scheme. Exclusion Criteria: \- Opposition of the patient and/or parental authority if the patient is a minor, to participation in the study.

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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.

How to take part

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

  1. The places running it

    32 sites in 11 countries. The list below names each one and where it is.

  2. 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 ↗

  3. 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

Locations

  • APHM Hôpitaux de Marseille

    RECRUITING

    Marseille, France

  • Antwerp University Hospital

    NOT_YET_RECRUITING

    Antwerp, Belgium

  • CH Agen-Nérac

    RECRUITING

    Nérac, 47600, France

  • CHRU Nancy

    RECRUITING

    Nancy, France

  • CHU Morvan

    RECRUITING

    Brest, 29200, France

  • CHU d'Angers

    RECRUITING

    Angers, 49000, France

  • CHU de Besançon

    RECRUITING

    Besançon, 25030, France

  • CHU de Bordeaux

    NOT_YET_RECRUITING

    Bordeaux, France

  • CHU de Dijon

    NOT_YET_RECRUITING

    Dijon, 21231, France

  • CHU de Montpellier

    RECRUITING

    Montpellier, 34295, France

  • CHU de Nantes

    RECRUITING

    Nantes, 44000, France

  • Children's Hospital Zagreb

    NOT_YET_RECRUITING

    Zagreb, Croatia

  • Hacettepe İhsan Doğramacı Children's Hospital

    RECRUITING

    Ankara, Turkey (Türkiye)

  • Hospital Universitari Vall d'Hebron

    NOT_YET_RECRUITING

    Barcelona, Spain

  • Hospital Universitario Son Espases

    NOT_YET_RECRUITING

    Palma de Mallorca, Spain

  • Hôpital Armand Trousseau

    NOT_YET_RECRUITING

    Paris, 75012, France

  • Hôpital Bichat

    NOT_YET_RECRUITING

    Paris, 75018, France

  • Hôpital Bicêtre

    NOT_YET_RECRUITING

    Le Kremlin-Bicêtre, 94270, France

  • Hôpital Claude Huriez, CHU de Lille

    NOT_YET_RECRUITING

    Lille, 59000, France

  • Hôpital Femme Mère Enfant - HCL

    RECRUITING

    Bron, 69500, France

  • Hôpital Necker Enfants Malades

    RECRUITING

    Paris, Île-de-France Region, 75015, France

  • Hôpital Robert Debré

    NOT_YET_RECRUITING

    Paris, 75019, France

  • Hôpital de Mercy - CHR Metz Thionville

    RECRUITING

    Ars-Laquenexy, 57530, France

  • Hôpital de l'Archet

    RECRUITING

    Nice, 06200, France

  • Hôpital des Enfants - CHU de Toulouse

    RECRUITING

    Toulouse, 31300, France

  • Hôpitaux Nord Ouest Villefranche

    RECRUITING

    Gleizé, 69400, France

  • Karolinska University Hospital

    NOT_YET_RECRUITING

    Stockholm, Sweden

  • Leeds Teaching Hospitals NHS Trust

    NOT_YET_RECRUITING

    Leeds, United Kingdom

  • Medical University Innsbruck

    NOT_YET_RECRUITING

    Innsbruck, Austria

  • Meyer Children's Hospital IRCCS

    RECRUITING

    Florence, Italy

  • Motol University Hospital

    RECRUITING

    Prague, Czechia

  • University of Tübingen

    RECRUITING

    Tübingen, Germany

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