Actively Recruiting

All Genders
NCT05179863

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

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Diagnosed with a rare disease
  • High suspicion of a rare disease
  • Treated or living in Switzerland
  • Signed informed consent
Not Eligible

You will not qualify if you...

  • None

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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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

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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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