{"doc_desc":{"title":"Genetic Cascade Screening for Familial Hypercholesterolemia"},"study_desc":{"title_statement":{"idno":"10.16909-dataset-63","title":"Genetic Cascade Screening for Familial Hypercholesterolemia","sub_title":"A Randomized Clinical Trial","alternate_title":"CATCH Study"},"authoring_entity":[{"name":"David Nanchen","affiliation":"Unisant\u00e9, Center for Primary Care and Public Health & University of Lausanne, Lausanne, Switzerland"}],"production_statement":{"copyright":"(c) 2026, Unisant\u00e9, University Center for Primary Care and Public Health, Lausanne, Switzerland","funding_agencies":[{"name":"Swiss Heart Foundation","abbr":"SHF","role":""}]},"version_statement":{"version_date":"2025-01-01"},"study_info":{"abstract":"Question: How can the uptake of genetic cascade screening for familial hypercholesterolemia be improved when healthcare providers cannot directly contact relatives?\n\nFindings: In this randomized, open-label, multicenter implementation trial including 87 families with genetically confirmed familial hypercholesterolemia, 30% of relatives in the intervention arm underwent genetic testing when given access to web-based communication technologies compared with 17% in the usual-care arm, representing a significant difference. \n\nMeaning: Leveraging communication technologies may enhance effectiveness of genetic cascade screening programs for familial hypercholesterolemia.","coll_dates":[{"start":"2020\/11\/01","end":"2023\/10\/31","cycle":""}],"nation":[{"name":"Switzerland","abbreviation":"CHE"}],"geog_coverage":"National coverage","analysis_unit":"individuals","data_kind":"Clinical data [cli]","notes":"Children and adults"},"method":{"data_collection":{"sampling_procedure":"The trial protocol was first submitted to the ethics committee on May 15, 2020, with amendments on August 3, 2020, and August 10, 2022. The final version is  provided V1.3, dated 10.08.2022. The only significant change between the initial version of the protocol (V1.1, dated 15.05.2020) and the final version (V1.3, dated 10.08.2022) concerned the number of participants to be included in the study. Recruitment began in November 2020 with the aim of enrolling 56 families with genetically confirmed familial hypercholesterolemia (FH), as estimated in the initial sample size calculation. In August 2022, due to lower-than-expected relative participation in the CATCH study, we revised the sample size calculation. The new target was 82 families with genetic FH, to ensure that a sufficient number of relatives would be included to detect differences in participation rates between study groups.","coll_mode":["Face-to-face [f2f]"],"sources":[{"name":"","origin":"","characteristics":""}]}},"data_access":{"dataset_availability":{"access_place":"Unisant\u00e9 Data repository","access_place_url":"https:\/\/doi.org\/10.16909\/dataset\/63","status":"The dataset is available on request for research purpose only.\nTo get access to data, the following procedure must be followed:\n\u00b7 Create an account (Login \u2192 Register)\n\u00b7 Go to the Data Catalog and click on the study of interest (https:\/\/doi.org\/10.16909\/dataset\/63)\n\u00b7 Once on the study page, click on the tab \"Data Access\"\n\u00b7 Fill in the application form and submit\n\u00b7 The request will then be reviewed by Unisant\u00e9. If accepted, a Data transfer agreement will be created\n\u00b7 Sign the Data transfert agreement\nImportant: Before submitting a request, please check whether the data is at all useful for your project. The codebooks with the corresponding information are filed under Documentation and do not require registration."},"dataset_use":{"contact":[{"name":"Documentation and data unit (UDD)","affiliation":"Unisant\u00e9, University Center for Primary Care and Public Health, Lausanne, Switzerland","email":"udd.data@unisante.ch","uri":"https:\/\/www.unisante.ch\/fr\/formation-recherche\/bibliotheque"}],"conditions":"This dataset is submitted to the Federal Act on Research involving Human Beings (HRA). Therefore, an ethical approval will be required to use this dataset.\nThe Data transfer agreement must be signed before releasing the dataset"}}},"schematype":"survey","tags":[{"tag":"ADULTS"},{"tag":"CHILDRENS"},{"tag":"HUMANS"}]}