Swiss Rare Disease Registry (SRDR)
ConditionRare Diseases
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity of Bern
About this trial
The SRDR is a national registry that records rare diseases in people of any age who live in Switzerland. It serves as a platform for scientists, health professionals, affected people, and politicians.The SRDR aims to collect epidemiological data on rare diseases, and data on changes to the diagnosis over time. The SRDR will further serve as a research platform and facilitate patient participation in national and international studies. The SRDR will promote harmonization of data and method between the numerous existing disease-specific registries in Switzerland, will strengthen the exchange with international rare disease registries for research and policy, and will build a network for communication for patients and health care providers.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Diagnosed with a rare disease
High suspicion of a rare disease
Treated or living in Switzerland
Signed informed consent
Disqualifiers
None
Trial population
All individuals with a high suspicion, or a confirmed diagnosis of a rare disease who are treated or living in Switzerland.
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Not listed
Trial groups
500,000 Participants
are grouped into 1 trial groupGroup A: Patient population
Trial outcomes
Primary outcomes
1
Personal Data
Registering patients personal data
Time frame
At diagnosis (age 0-99 years)2
Diagnosis
Orpha Code of the diagnosed rare disease
Time frame
At diagnosis (age 0-99 years)3
Date of Diagnosis
Date on which the diagnosis was made
Time frame
At diagnosis (age 0-99 years)4
Disease History
History of first occurrence of symptoms
Time frame
At registration (age 0-99 years)Sponsors and contacts
Click on the lead sponsor to view all of their trials.
University of Bern
Lead sponsor
Federal Office of Public Health, Switzerland
Collaborator
Universitäts-Kinderspital Zürich
Collaborator
University Children's Hospital Basel
Collaborator
Insel Gruppe AG, University Hospital Bern
Collaborator
University Hospital, Zürich
Collaborator
Centre Hospitalier Universitaire Vaudois
Collaborator
University Hospital, Geneva
Collaborator
Proraris Allianz seltener Krankheiten
Collaborator
Kosek National Coordination Rare Diseases Switzerland
Collaborator
Orphanet Suisse
Collaborator
University of Zurich
Collaborator
Kantonsspital Aarau
Collaborator
Ente Ospedaliero Cantonale, Bellinzona
Collaborator
Cantonal Hospital of St. Gallen
Collaborator
Ostschweizer Kinderspital
Collaborator
University Hospital, Basel, Switzerland
Collaborator
Balgrist University Hospital
Collaborator
Centro Malattie Rare della Svizzera Italiana
Collaborator
Source ClinicalTrials.gov