Video-based assessments of activities of daily living: generating real-world evidence in pediatric rare diseases
Author:
Affiliation:
1. Aparito Ltd, Wrexham, UK
Funder
Aparito Ltd
Publisher
Informa UK Limited
Link
https://www.tandfonline.com/doi/pdf/10.1080/14737167.2024.2360201
Reference69 articles.
1. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database
2. EURORDIS - Rare Diseases Europe. Information & support. What is a rare disease? [Internet]. [cited 2024 Apr 19]. Available from: https://www.eurordis.org/information-support/what-is-a-rare-disease/
3. Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members – a Systematic Review
4. EURORDIS-Rare Diseases Europe. Juggling care and daily life: the balancing act of the rare disease community [Internet]. 2017 [cited 2024 Apr 27]. Available from: https://download2.eurordis.org/rbv/2017_05_09_Social%20survey%20leaflet%20final.pdf
5. Living with a rare disease - experiences and needs in pediatric patients and their parents
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