The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review.
Maria RapoportMichael B BoberCathleen RaggioLena Lande WekreFrank RauchIngunn WesterheimTracy HartTaco van WelzenisArun MistryJames ClancyLucy BoothSamantha PrinceOliver SemlerPublished in: Orphanet journal of rare diseases (2023)
Despite the rarity of OI, the volume of recently published literature highlights the breadth of interest in the OI field from the research community. However, significant data gaps describing the experience of OI for individuals, their families, and wider society warrant further research to capture and quantify the full impact of OI.