Developing a Framework of Cost Elements of Socioeconomic Burden of Rare Disease: A Scoping Review.
Gillian R CurrieBrittany GerberDiane L LorenzettiKaren V MacDonaldSusanne M BenselerFrançois P BernierKym M BoycottK Vanessa CariasBettina HamelinRobin Z HayeemsClaire LeBlancMarinka TwiltGijs van RooijenDurhane Wong-RiegerRae S M YeungDeborah A MarshallPublished in: PharmacoEconomics (2023)
Our work is the first to identify a comprehensive list of cost elements for rare disease for use by researchers and policy makers to fully capture socioeconomic burden. Use of the framework will increase the quality and comparability of future studies. Future work should focus on measuring and valuing these costs through onset, diagnosis, and post-diagnosis.