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Improving outcome measures in late onset Pompe disease: Modified Rasch-Built Pompe-Specific Activity scale.

Harmke A van KootenMike C HortonStephan WenningerHaris BabačićBenedikt SchoserClaire LefeuvreNajib TaouaghPascal LaforêtSonia SegoviaJordi Díaz-ManeraKristl G ClaeysTiziana MonginiOlimpia MusumeciAntonio ToscanoThomas HundsbergerEsther BrussePieter A van DoornAns T van der PloegNadine A M E van der Beeknull null
Published in: European journal of neurology (2024)
After removing one item, the modified-R-PAct scale is a valid disease-specific patient-reported outcome measure for patients with Pompe disease across multiple countries.
Keyphrases
  • late onset
  • early onset
  • patient reported outcomes
  • replacement therapy