SwissPedRegistry is a research platform for pediatric registries. It is part of SwissPedNet, the Swiss research network of clinical pediatric hubs. SwissPedRegistry provides expertise and advice on developing and overseeing epidemiological or clinical registries collecting data on children or persons of any age. This includes advice on databases for registries; dataset and data collection; data transfer and linkage; ethics applications; questionnaire design; contracts; and data safety measures. SwissPedRegistry can also host registries if this is desired. SwissPedRegistry also contributes data and expertise to international registries and research projects. It collaborates closely with Swiss RDL – the medical Registries and Data Linkage center at the ISPM Bern – in particular for data linkage and software development.
Currently, in close collaboration with clinicians, it coordinates several national registries and cohort studies:
- Swiss Growth Registry (SGR, with pediatric endocrinologists)
- Swiss Pediatric Renal Registry (SPRR, with pediatric nephrologists)
- Swiss Primary Ciliary Dyskinesia Registry (SPCDR, with several medical specialties)
- Swiss Pediatric Airway Cohort (SPAC, with pediatric pulmonologists)
- Swiss Cerebral Palsy Registry (Swiss-CP-Reg, with pediatric neurologists and rehabilitation specialists)
- Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD, with several subspecialties)
- Swiss Rare Disease Registry (SRDR, with several pediatric subspecialties).
How to request support from SwissPedRegistry:
- Fill in the form “SwissPedRegistry – Request for Support” and send it to the head of the SwissPedRegistry, Prof. Claudia Kuehni, and the coordinator, Verena Pfeiffer.
- We will get back to you as soon as possible and arrange a first meeting to discuss your request.