2023 was a busy year for peer-reviewed journal contributions and we produced four Aparito white papers covering topics including vCOA development, the benefits of provisioned versus bring-your-own-device, and the merits of ePROs over paper-based PROs.
Journals
So You Want to Build Your Disease’s First Online Patient Registry: An Educational Guide for Patient Organizations Based on US and European Experience
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10031688/
Development and usability testing of an ePRO solution for patients with inflammatory diseases in an ATMP basket trial
https://pubmed.ncbi.nlm.nih.gov/37812323/
Patient-reported, health economic and psychosocial outcomes in patients with Friedreich ataxia (PROFA): protocol of an observational study using momentary data assessments via mobile health app
https://bmjopen.bmj.com/content/13/8/e075736
A global neuronopathic Gaucher disease registry (GaRDIAN): a patient-led initiative
https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-02828-w
Considerations for patient and public involvement and engagement in health research
https://www.nature.com/articles/s41591-023-02445-x
Digitally enabled decentralised research: opportunities to improve the efficiency of clinical trials and observational studies
https://pubmed.ncbi.nlm.nih.gov/36810190/
Accelerometer-derived sleep measures in idiopathic dystonia: A UK Biobank cohort study
https://pubmed.ncbi.nlm.nih.gov/37547976/
White papers
Video-Based Assessments to Digitise COA: the story of SARAhome
Video-Based Assessments to Digitise COA: the story of SARAhome
Pixels or paper? Exploring Patient-Reported Outcomes (PROs) in Clinical Trials
Pixels or paper? Exploring Patient-Reported Outcomes (PROs) in Clinical Trials
Video-Based Assessments to Digitise COA: validating vTUG for Parkinson’s disease
Video-Based Assessments to Digitise COA: validating vTUG for Parkinson’s disease
Provisioned Devices vs BYOD in Clinical Trials
Provisioned Devices vs BYOD in Clinical Trials