Massive swiss registry launches to map half a million lives with rare diseases
NCT ID NCT05179863
Summary
This project is creating a national registry to collect information about people in Switzerland who have a rare disease. The goal is to gather data to better understand these conditions, improve healthcare, and connect patients to research opportunities. It aims to enroll up to 500,000 participants by having their doctors invite them to join after diagnosis.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes NO responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Contacts and locations
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Study contacts
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Contact
Phone: •••-•••-•••• Email: •••••@•••••
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Email: •••••@•••••
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
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Conditions
Explore the condition pages connected to this study.