Actively Recruiting
Swiss Rare Disease Registry (SRDR)
Led by University of Bern · Updated on 2025-11-28
500000
Participants Needed
20
Research Sites
2765 weeks
Total Duration
On this page
Sponsors
U
University of Bern
Lead Sponsor
F
Federal Office of Public Health, Switzerland
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Swiss Rare Disease Registry (SRDR)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosed with a rare disease
- High suspicion of a rare disease
- Treated or living in Switzerland
- Signed informed consent
You will not qualify if you...
- None
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 20 locations
1
Kantonsspital Aarau, Pädiatrie
Aarau, Switzerland
Actively Recruiting
2
Kantonsspital Aarau
Aarau, Switzerland
Actively Recruiting
3
Center for Rare Diseases, Basel
Basel, Switzerland
Not Yet Recruiting
4
Universitäs-Kinderspital beider Basel, UKBB
Basel, Switzerland
Not Yet Recruiting
5
Universitätsspital Basel, USB
Basel, Switzerland
Not Yet Recruiting
6
Centro Malattie Rare della Svizzera Italiana
Bellinzona, Switzerland
Actively Recruiting
7
Center for Rare Diseases, Inselspital
Bern, Switzerland
Actively Recruiting
8
University of Bern, Inselspital Bern
Bern, Switzerland
Actively Recruiting
9
Center for Rare Diseases, Geneva
Geneva, Switzerland
Actively Recruiting
10
Hôpitaux universitaires de Genève, HUG
Geneva, Switzerland
Actively Recruiting
11
Center for Rare Diseases, Lausanne
Lausanne, Switzerland
Actively Recruiting
12
Centre hospitalier universitaire vaudois, CHUV
Lausanne, Switzerland
Actively Recruiting
13
Kantonsspital St. Gallen
Sankt Gallen, Switzerland
Not Yet Recruiting
14
Ostschweizer Kinderspital
Sankt Gallen, Switzerland
Not Yet Recruiting
15
Ostschweizer Zentrum für seltene Krankheiten, Pädiatrie
Sankt Gallen, Switzerland
Not Yet Recruiting
16
Ostschweizer Zentrum für seltene Krankheiten
Sankt Gallen, Switzerland
Not Yet Recruiting
17
Center for Rare Diseases, Zurich
Zurich, Switzerland
Not Yet Recruiting
18
Universitäts-Kinderspital Zürich, Kispi
Zurich, Switzerland
Actively Recruiting
19
Universitätsklinik Balgrist
Zurich, Switzerland
Not Yet Recruiting
20
Universitätsspital Zürich, USZ
Zurich, Switzerland
Not Yet Recruiting
Research Team
C
Cheryl von Arx
CONTACT
M
Myrofora Goutaki, Prof Dr
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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