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

Mansoob, Sanna LU orcid ; Hellström, Dan ; Burstedt, Magnus ; Grände, Malin ; Gunnarsson, Cecilia ; Juran, Stephanie ; Lovmar, Lovisa ; Sandgren, Katarina ; Johansson Soller, Maria and Wedell, Anna , et al. (2026) In BMC global and public health 4(1).
Abstract

In the Swedish universal healthcare system, persons living with rare diseases (PLWRD) face major challenges in receiving diagnosis and accessing care,stemming in part from heterogeneity of disease and systemic barriers to care. This contributes to health inequity and a lack of visibility for PLWRD within thehealth system. This Perspective paper provides an overview of the facilitators and challenges during the development and implementation of a national raredisease (RD) quality registry, RaraSwed. The registry collects data on RD diagnosis. Adopting a social innovation and systems thinking methodology, inaddition to governance, have proven beneficial. RaraSwed supports RD research, evidence-based RD care, and Sweden’s National Quality... (More)

In the Swedish universal healthcare system, persons living with rare diseases (PLWRD) face major challenges in receiving diagnosis and accessing care,stemming in part from heterogeneity of disease and systemic barriers to care. This contributes to health inequity and a lack of visibility for PLWRD within thehealth system. This Perspective paper provides an overview of the facilitators and challenges during the development and implementation of a national raredisease (RD) quality registry, RaraSwed. The registry collects data on RD diagnosis. Adopting a social innovation and systems thinking methodology, inaddition to governance, have proven beneficial. RaraSwed supports RD research, evidence-based RD care, and Sweden’s National Quality Policy and Strategy(NQPS) for RD. Future modules on patient-reported and physician-reported data on care coordination, treatment and clinical attributes will capture the holisticpatient experience. RaraSwed may contribute to health equity for PLWRD in Sweden and in turn facilitate international RD data harmonisation.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Health equity, Health policy, Rare diseases, Registries, Sweden, Universal health care
in
BMC global and public health
volume
4
issue
1
article number
58
publisher
BioMed Central (BMC)
external identifiers
  • scopus:105041990288
  • pmid:42298664
ISSN
2731-913X
DOI
10.1186/s44263-026-00276-9
language
English
LU publication?
yes
id
06f18924-4370-46b2-84b0-0856a16c5c50
date added to LUP
2026-07-03 09:34:23
date last changed
2026-07-31 12:08:12
@article{06f18924-4370-46b2-84b0-0856a16c5c50,
  abstract     = {{<p>In the Swedish universal healthcare system, persons living with rare diseases (PLWRD) face major challenges in receiving diagnosis and accessing care,stemming in part from heterogeneity of disease and systemic barriers to care. This contributes to health inequity and a lack of visibility for PLWRD within thehealth system. This Perspective paper provides an overview of the facilitators and challenges during the development and implementation of a national raredisease (RD) quality registry, RaraSwed. The registry collects data on RD diagnosis. Adopting a social innovation and systems thinking methodology, inaddition to governance, have proven beneficial. RaraSwed supports RD research, evidence-based RD care, and Sweden’s National Quality Policy and Strategy(NQPS) for RD. Future modules on patient-reported and physician-reported data on care coordination, treatment and clinical attributes will capture the holisticpatient experience. RaraSwed may contribute to health equity for PLWRD in Sweden and in turn facilitate international RD data harmonisation.</p>}},
  author       = {{Mansoob, Sanna and Hellström, Dan and Burstedt, Magnus and Grände, Malin and Gunnarsson, Cecilia and Juran, Stephanie and Lovmar, Lovisa and Sandgren, Katarina and Johansson Soller, Maria and Wedell, Anna and Soussi Zander, Cecilia and Wennberg, Alexandra and Stenmark Askmalm, Marie}},
  issn         = {{2731-913X}},
  keywords     = {{Health equity; Health policy; Rare diseases; Registries; Sweden; Universal health care}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{BMC global and public health}},
  title        = {{Extracting homogenous data from heterogenous diseases : RaraSwed, the Swedish national rare disease quality registry}},
  url          = {{http://dx.doi.org/10.1186/s44263-026-00276-9}},
  doi          = {{10.1186/s44263-026-00276-9}},
  volume       = {{4}},
  year         = {{2026}},
}