So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience
Author:
Publisher
Springer Science and Business Media LLC
Subject
General Engineering
Link
https://link.springer.com/content/pdf/10.1007/s40271-023-00619-w.pdf
Reference50 articles.
1. Gliklich RE, Leavy MB, Dreyer NA. Registries for evaluating patient outcomes: a user’s guide. Fourth edition. Agency for Healthcare Research and Quality (AHRQ); 2020. https://effectivehealthcare.ahrq.gov/products/registries-guide-4th-edition/users-guide. Accessed 9 Mar 2023.
2. Nelson EC, Dixon-Woods M, Batalden PB, Homa K, Van Citters AD, Morgan TS, et al. Patient focused registries can improve health, care, and science. BMJ. 2016. https://doi.org/10.1136/bmj.i3319.
3. Okun S, Goodwin K. Building a learning health community: by the people, for the people. Learn Health Syst. 2017;1: e10028.
4. Bradley M, Braverman J, Harrington M, Wicks P. Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe. Res Involv Engagem. 2016;2:33.
5. Davis HE, Assaf GS, McCorkell L, Wei H, Low RJ, Reem Y, et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. eClinicalMedicine. 2021;38: 101019.
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