Extracting homogenous data from heterogenous diseases: RaraSwed, the Swedish national rare disease quality registry
Sanna Mansoob, Dan Hellström, Magnus Burstedt, Malin Grände, Cecilia Gunnarsson, Stephanie Juran, Lovisa Lovmar, Katarina Sandgren, Maria Johansson Soller, Anna Wedell, Cecilia Soussi Zander, Alexandra Wennberg, Marie Stenmark Askmalm · 2026
Read Extracting homogenous data from heterogenous diseases: RaraSwed, the Swedish national rare disease quality registry by Sanna Mansoob, Dan Hellström, Magnus Burstedt, Malin Grände, Cecilia Gunnarsson, Stephanie Juran, Lovisa Lovmar, Katarina Sandgren, Maria Johansson Soller, Anna Wedell, Cecilia Soussi Zander, Alexandra Wennberg, Marie Stenmark Askmalm (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/PMC13270570.txt.
Description
Sanna Mansoob is lead author of a 2026 Perspective paper on RaraSwed, Sweden's national quality registry for rare diseases. A Perspective paper sets out the authors' view and plans rather than a trial result. The registry gathers uniform data on rare disease diagnosis across a very mixed group of illnesses.
The authors describe what helped and what hindered building the registry inside Sweden's public health system, using systems thinking and social innovation ideas. They say RaraSwed supports research and evidence-based care for people with rare diseases, who often face delays and unequal care. Planned additions will record patient- and doctor-reported care, treatment, and daily experience.
Catalog record
| CREATOR | Sanna Mansoob, Dan Hellström, Magnus Burstedt, Malin Grände, Cecilia Gunnarsson, Stephanie Juran, Lovisa Lovmar, Katarina Sandgren, Maria Johansson Soller, Anna Wedell, Cecilia Soussi Zander, Alexandra Wennberg, Marie Stenmark Askmalm |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 41506 |
| LICENSE | https://creativecommons.org/licenses/by/4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |