Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar for Study of Rare Disease Populations

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar for Study of Rare Disease Populations

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) a...

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Bibliographic Details
Main Authors: Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh
Format: Article
Language:English
Published: Advocate Aurora Health 2023-04-01
Series:Journal of Patient-Centered Research and Reviews
Subjects:
real-world data
patient-reported outcomes
sickle cell
rare diseases
data sharing
qualitative research
Online Access:https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=2006&context=jpcrr

Internet

https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=2006&context=jpcrr

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