Switzerland launches massive rare disease registry to unlock secrets of thousands of conditions
NCT ID NCT05179863
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.
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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.
Contacts and locations
Locations
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Center for Rare Diseases, Basel
NOT_YET_RECRUITINGBasel, Switzerland
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Center for Rare Diseases, Geneva
RECRUITINGGeneva, Switzerland
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Center for Rare Diseases, Inselspital
RECRUITINGBern, Switzerland
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Center for Rare Diseases, Lausanne
RECRUITINGLausanne, Switzerland
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Center for Rare Diseases, Zurich
NOT_YET_RECRUITINGZurich, Switzerland
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Centre hospitalier universitaire vaudois, CHUV
RECRUITINGLausanne, Switzerland
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Centro Malattie Rare della Svizzera Italiana
RECRUITINGBellinzona, Switzerland
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Hôpitaux universitaires de Genève, HUG
RECRUITINGGeneva, Switzerland
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Kantonsspital Aarau
RECRUITINGAarau, Switzerland
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Kantonsspital Aarau, Pädiatrie
RECRUITINGAarau, Switzerland
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Kantonsspital St. Gallen
NOT_YET_RECRUITINGSankt Gallen, Switzerland
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Ostschweizer Kinderspital
NOT_YET_RECRUITINGSankt Gallen, Switzerland
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Ostschweizer Zentrum für seltene Krankheiten
NOT_YET_RECRUITINGSankt Gallen, Switzerland
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Ostschweizer Zentrum für seltene Krankheiten, Pädiatrie
NOT_YET_RECRUITINGSankt Gallen, Switzerland
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University of Bern, Inselspital Bern
RECRUITINGBern, Switzerland
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Universitäs-Kinderspital beider Basel, UKBB
NOT_YET_RECRUITINGBasel, Switzerland
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Universitäts-Kinderspital Zürich, Kispi
RECRUITINGZurich, Switzerland
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Universitätsklinik Balgrist
NOT_YET_RECRUITINGZurich, Switzerland
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Universitätsspital Basel, USB
NOT_YET_RECRUITINGBasel, Switzerland
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Universitätsspital Zürich, USZ
NOT_YET_RECRUITINGZurich, Switzerland
More trials for these conditions
Other studies related to the condition(s) this trial covers.
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- Scientists launch study to map rare baker gordon syndrome from childhood to adulthood