The SRDR aims to provide accurate data on the prevalence of rare diseases in Switzerland, to enable the evaluation of the quality of care, and to identify gaps in healthcare. It facilitates national and international research on rare diseases for healthcare professionals, by identifying patients for epidemiological and clinical studies. Through surveys, it can identify the needs of affected individuals and the concerns of the medical community. As a result, the SRDR can contribute to improving the treatment and support of people with rare diseases.
The SRDR is a national registry for all rare diseases, hosted at ISPM Bern. It aims to register all individuals with a confirmed diagnosis or a strong suspicion of diagnosis who are residents in Switzerland or receive treatment here. There is no age limit, and registration is voluntary.
Until now people with a rare disease could mainly be registered to the SRDR by their treating doctor or hospital. Since this week, people can easily register themselves via the new SRDR online portal, after they read the information and upload a signed consent form. Information and step by step instructions are available on the SRDR website. Currently registration is available in German and English. French and Italian will be available in the next few months.
Any person with a rare disease over the age of 18 can join directly online. Parents can register their children and adolescents and legal representatives the people under their care. Patients can decide to withdraw their consent at any time by informing the SRDR or their treating physician.
This online registration portal aims to empower people living with a rare disease and their families to contribute to the registry directly, stay informed and actively participate in rare diseases research. We invite everyone living with a rare disease to join and spread the word!
