SwissPedRegistry

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; data set 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.

For more information, please refer to the article on SwissPedRegistry in “Paediatrica”.

Activities of SwissPedRegistry

  1. Leads and contributes to projects of national importance for pediatric research, e.g., contributes to the development of the Swiss Rare Disease Registry and to the continuation of SwissPedHealth.
  2. On request: hosts pediatric registries/cohorts and provided infrastructure and services as mentioned under points 3.) and 4.), if prerequisites are met.
  3. Develops networks, regulatory framework, methodology and instruments for registries/cohorts, e.g.
    • basic data sets or variable lists
    • software options for databases
    • procedures for data linkage
    • options for direct data import from other sources
    • data safety and quality measures and procedures
    • ethics
    • organizational structure templates
    • examples for contracts and agreements.
  4. Provides expertise and counseling to groups that want to set up or improve epidemiological or clinical registries or cohort studies that focus on or include children or adolescents. This can include advice on e.g.,
    • Organizational structure
    • Definition of the dataset
    • Logistics of patient recruitment and data collection
    • Software options for databases
    • Ethics applications (confined to registry issues)
    • Development of contracts and agreements
    • Study design
    • Possibilities for address updates and long-term follow-up
    • Possibilities for data linkage
    • Publication of data for monitoring purposes (e.g., annual report)
    • Conducting questionnaire studies
    • Funding options
  5. Participates in discussions, meetings and working groups on registry/cohorts relevant issues
  6. Further activities:
    • Constitutes a research platform for clinical and epidemiological studies nested in pediatric registries
    • Provides support to use registries for identifying patients who meet inclusion criteria for clinical trials planned by pediatric hubs
    • Maintains a relationship to the SCTO CTU network to enable collaboration
    • Participaes in SwissPedNet activities, such as field trips, hub staff meetings etc.