University of Bern
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.
Rare Diseases
Background: In Europe a disease is considered rare when fewer than one in 2'000 people are affected. Today, more than 7'000 rare diseases are known. Although scarce, rare diseases all together affect approximately 5-8% of the people around the world. In Switzerland, more than 500'000 people live with a rare disease. Clinical and epidemiological studies on rare diseases in Switzerland are lacking. Little is known about diagnostics, efficient treatment, and the course of rare diseases. The cantonal Ethics Committee of Bern approved the SRDR project (project ID: 2017-02313, observational study, risk category A). Objectives: The overall goal of the SRDR is to improve the care situation of people living with a rare disease in Switzerland. The development of a national registry to collect representative and complete data from children and adults with a rare disease in Switzerland helps to achieve this overall goal. Primary objectives of the SRDR project: 1. Collect epidemiological data on rare diseases from all patients with rare diseases in Switzerland (incidence, prevalence, survival, mortality). 2. Collect data on quality of health care and outcomes (diagnosis, management, outcomes, quality indicators, treating institutions). 3. Setup a research platform for clinical, epidemiological, basic, and translational research on all rare diseases. 4. Facilitate patients to participate in national and international studies. 5. Promote harmonisation of data and methods between the numerous existing disease-specific registries in Switzerland. 6. Strengthen exchange with international rare disease registries for research and policy. 7. Build a network for communication, for patients and health care providers. Procedure: After a person has been diagnosed with a rare disease, the medical staff inform the patient and/or the legal representative orally about the SRDR and its purpose during regular consultation. The medical staff will hand over the written age-appropriate patient information and the informed consent form. Patient organizations and the staff from the SRDR also have the possibility to inform people about the SRDR. Further, patients have the possibility to use a secure web-based application for self-notification. The patient or/and the legal representative have 6 weeks to give or refuse the informed consent. Patients who wish to participate sign the consent form and are then registered in the SRDR. If a patient or/and legal representative do neither refuse registration nor sign informed consent within 6 weeks, the data will be registered. If a patient does not wish to participate, only a minimal anonymous data set is recorded.
| Study Type : | OBSERVATIONAL |
| Estimated Enrollment : | 500000 participants |
| Official Title : | Swiss Rare Disease Registry |
| Actual Study Start Date : | 2018-01-01 |
| Estimated Primary Completion Date : | 2071-01 |
| Estimated Study Completion Date : | 2071-01 |
Information not available for Arms and Intervention/treatment
| Ages Eligible for Study: | |
| Sexes Eligible for Study: | ALL |
| Accepts Healthy Volunteers: |
Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.
RECRUITING
Aarau Cantonal Hospital, pediatrics
Aarau, Switzerland,
RECRUITING
Aarau Cantonal Hospital
Aarau, Switzerland,
NOT YET RECRUITING
Center for Rare Diseases, Basel
Basel, Switzerland,
NOT YET RECRUITING
University Children's Hospital of Basel, UKBB
Basel, Switzerland,
NOT YET RECRUITING
University Hospital Basel, USB
Basel, Switzerland,
RECRUITING
Rare Disease Center of Italian Switzerland
Bellinzona, Switzerland,
RECRUITING
Center for Rare Diseases, Inselspital
Bern, Switzerland,
RECRUITING
University of Bern, Inselspital Bern
Bern, Switzerland,
RECRUITING
Center for Rare Diseases, Geneva
Geneva, Switzerland,
RECRUITING
Geneva University Hospitals, HUG
Geneva, Switzerland,
RECRUITING
Center for Rare Diseases, Lausanne
Lausanne, Switzerland,
RECRUITING
Vaud university hospital center, CHUV
Lausanne, Switzerland,
NOT YET RECRUITING
St. Gallen Cantonal Hospital
Saint Gallen, Switzerland,
NOT YET RECRUITING
Eastern Swiss children's hospital
Saint Gallen, Switzerland,
NOT YET RECRUITING
Eastern Swiss Center for Rare Diseases, Pediatrics
Saint Gallen, Switzerland,
NOT YET RECRUITING
Eastern Swiss Center for Rare Diseases
Saint Gallen, Switzerland,
NOT YET RECRUITING
Center for Rare Diseases, Zurich
Zurich, Switzerland,
RECRUITING
University Children's Hospital Zurich, Kispi
Zurich, Switzerland,
NOT YET RECRUITING
Balgrist University Hospital
Zurich, Switzerland,
NOT YET RECRUITING
University Hospital Zurich, USZ
Zurich, Switzerland,