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Switzerland launches massive rare disease registry to unlock secrets of thousands of conditions

NCT ID NCT05179863

Knowledge-focused Sponsor: University of Bern 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is building a national registry in Switzerland for people of any age with a rare disease or strong suspicion of one. Researchers will collect data on diagnoses, genetics, and disease history to better understand these conditions. The registry aims to support research, connect patients with studies, and improve care.

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 registry could improve understanding of rare diseases and help connect patients to research studies.
What could go wrong
This is an observational registry, not a treatment trial. It will not directly test any therapy or provide a cure.

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 500,000 people

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

Started

Jan 2018

Expected to finish

Jan 2071

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

All individuals with a high suspicion, or a confirmed diagnosis of a rare disease who are treated or living in Switzerland.

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: * Diagnosed with a rare disease * High suspicion of a rare disease * Treated or living in Switzerland * Signed informed consent Exclusion Criteria: * None

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Conditions

The condition(s) this trial relates to.

Rare Diseases

As listed by the trial registrant

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

Rare diseases

How to take part

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

  1. The places running it

    20 sites. 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

  • Center for Rare Diseases, Basel

    NOT_YET_RECRUITING

    Basel, Switzerland

  • Center for Rare Diseases, Geneva

    RECRUITING

    Geneva, Switzerland

  • Center for Rare Diseases, Inselspital

    RECRUITING

    Bern, Switzerland

  • Center for Rare Diseases, Lausanne

    RECRUITING

    Lausanne, Switzerland

  • Center for Rare Diseases, Zurich

    NOT_YET_RECRUITING

    Zurich, Switzerland

  • Centre hospitalier universitaire vaudois, CHUV

    RECRUITING

    Lausanne, Switzerland

  • Centro Malattie Rare della Svizzera Italiana

    RECRUITING

    Bellinzona, Switzerland

  • Hôpitaux universitaires de Genève, HUG

    RECRUITING

    Geneva, Switzerland

  • Kantonsspital Aarau

    RECRUITING

    Aarau, Switzerland

  • Kantonsspital Aarau, Pädiatrie

    RECRUITING

    Aarau, Switzerland

  • Kantonsspital St. Gallen

    NOT_YET_RECRUITING

    Sankt Gallen, Switzerland

  • Ostschweizer Kinderspital

    NOT_YET_RECRUITING

    Sankt Gallen, Switzerland

  • Ostschweizer Zentrum für seltene Krankheiten

    NOT_YET_RECRUITING

    Sankt Gallen, Switzerland

  • Ostschweizer Zentrum für seltene Krankheiten, Pädiatrie

    NOT_YET_RECRUITING

    Sankt Gallen, Switzerland

  • University of Bern, Inselspital Bern

    RECRUITING

    Bern, Switzerland

  • Universitäs-Kinderspital beider Basel, UKBB

    NOT_YET_RECRUITING

    Basel, Switzerland

  • Universitäts-Kinderspital Zürich, Kispi

    RECRUITING

    Zurich, Switzerland

  • Universitätsklinik Balgrist

    NOT_YET_RECRUITING

    Zurich, Switzerland

  • Universitätsspital Basel, USB

    NOT_YET_RECRUITING

    Basel, Switzerland

  • Universitätsspital Zürich, USZ

    NOT_YET_RECRUITING

    Zurich, Switzerland

More trials for these conditions

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