Backpack health reduces data‐sharing barriers between the medical community and individuals with rare diseases
Author:
Affiliation:
1. Backpack Health Boston Massachusetts USA
2. Ambry Genetics Aliso Viejo California USA
3. The Marfan Foundation Port Washington New York USA
4. Inclusive Thinking Knoxville Tennessee USA
5. Doulots, LLC Thompson Station Tennessee USA
Publisher
Wiley
Subject
Genetics(clinical),Genetics
Link
https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajmg.c.31868
Reference15 articles.
1. Backpack Health. (2019 November 19).Backpack health and project alive partner to advance hunter syndrome research [Press Release]. Retrieved fromhttps://www.backpackhealth.com/press-releases/project-alive-partnership-to-advance-hunter-syndrome-research
2. Survival in idursulfase-treated and untreated patients with mucopolysaccharidosis type II: data from the Hunter Outcome Survey (HOS)
3. “It is like a jungle gym, and everything is under construction”: The parent's perspective of caring for a child with a rare disease
4. Recommendations for the design of small population clinical trials
5. Patient Portals Facilitating Engagement With Inpatient Electronic Medical Records: A Systematic Review
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