Extracting homogenous data from heterogenous diseases: RaraSwed, the Swedish national rare disease quality registry.

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Title: Extracting homogenous data from heterogenous diseases: RaraSwed, the Swedish national rare disease quality registry.
Authors: Mansoob S; Department of Paediatrics, Skåne University Hospital, Southern Healthcare Region, Lund, Sweden. sanna.mansoob@med.lu.se.; Division of Paediatrics, Department of Clinical Sciences Lund, Lund University, Lund, Sweden. sanna.mansoob@med.lu.se., Hellström D; Centre for Rare Disease South, Department of Genetics, Pathology and Molecular Diagnostics, Office for Medical Services, Southern Healthcare Region, Lund, Sweden., Burstedt M; National Committee for Knowledge-Driven Management for Rare Diseases (Nationella Programområdet Sällsynta Diagnoser) within the National System for Knowledge-Driven Management, Swedish Association of Local Authorities and Regions (SALAR), Stockholm, Sweden.; Department of Medical and Clinical Genetics, Institute of Medical Biosciences, Umeå University Hospital, Northern Healthcare Region, Umeå, Sweden., Grände M; Rare Diseases Sweden, National Patient Advocacy Group, Riksförbundet Sällsynta diagnoser, Sundbyberg, Sweden., Gunnarsson C; National Committee for Knowledge-Driven Management for Rare Diseases (Nationella Programområdet Sällsynta Diagnoser) within the National System for Knowledge-Driven Management, Swedish Association of Local Authorities and Regions (SALAR), Stockholm, Sweden.; Department of Clinical Genetics, Linköping University Hospital, Southeast Healthcare Region, Linköping, Sweden., Juran S; Rare Diseases Sweden, National Patient Advocacy Group, Riksförbundet Sällsynta diagnoser, Sundbyberg, Sweden., Lovmar L; National Committee for Knowledge-Driven Management for Rare Diseases (Nationella Programområdet Sällsynta Diagnoser) within the National System for Knowledge-Driven Management, Swedish Association of Local Authorities and Regions (SALAR), Stockholm, Sweden.; Department of Clinical Genetics and Genomics, Sahlgrenska University Hospital, Western Healthcare Region, Göteborg, Sweden., Sandgren K; Centre for Rare Disease South, Department of Genetics, Pathology and Molecular Diagnostics, Office for Medical Services, Southern Healthcare Region, Lund, Sweden.; National Committee for Knowledge-Driven Management for Rare Diseases (Nationella Programområdet Sällsynta Diagnoser) within the National System for Knowledge-Driven Management, Swedish Association of Local Authorities and Regions (SALAR), Stockholm, Sweden., Johansson Soller M; Department of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, Sweden.; Department of Clinical Genetics, Uppsala University Hospital, Mid-Sweden Healthcare Region, Uppsala, Sweden., Wedell A; National Committee for Knowledge-Driven Management for Rare Diseases (Nationella Programområdet Sällsynta Diagnoser) within the National System for Knowledge-Driven Management, Swedish Association of Local Authorities and Regions (SALAR), Stockholm, Sweden.; Centre for Inherited Metabolic Diseases (CMMS), Karolinska University Hospital, Stockholm-Gotland Healthcare Region, Stockholm, Sweden., Soussi Zander C; National Committee for Knowledge-Driven Management for Rare Diseases (Nationella Programområdet Sällsynta Diagnoser) within the National System for Knowledge-Driven Management, Swedish Association of Local Authorities and Regions (SALAR), Stockholm, Sweden.; Department of Clinical Genetics, Uppsala University Hospital, Mid-Sweden Healthcare Region, Uppsala, Sweden., Wennberg A; Unit of Epidemiology, Institute of Environmental Medicine, Karolinska Institute, Stockholm, Sweden., Stenmark Askmalm M; Department of Haematology, Oncology and Radiation Physics, Skåne University Hospital, Southern Healthcare Region, Lund, Sweden.; Division of Oncology, Department of Clinical Sciences Lund, Lund University, Lund, Sweden.
Source: BMC global and public health [BMC Glob Public Health] 2026 Jun 16; Vol. 4 (1). Date of Electronic Publication: 2026 Jun 16.
Publication Type: Journal Article; Review
Journal Info: Publisher: BioMed Central Ltd Country of Publication: England NLM ID: 9918715987606676 Publication Model: Electronic Cited Medium: Internet ISSN: 2731-913X (Electronic) Linking ISSN: 2731913X NLM ISO Abbreviation: BMC Glob Public Health Subsets: PubMed not MEDLINE
Database: MEDLINE Ultimate
Description
ISSN:2731-913X
DOI:10.1186/s44263-026-00276-9