Video-based assessments of activities of daily living: generating real-world evidence in pediatric rare diseases
Published: 10/06/2024
The Digital 1-Minute Walk Test: A New Patient-centered Cardiorespiratory Endpoint
Published: 05/04/2024
Recommendations to address respondent burden associated with PROs
Published: 01/03/2024
A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH)
Published: 22/01/2024
Development and usability testing of an ePRO solution for patients with inflammatory diseases in an ATMP basket trial
Published: 11/10/2023
A pilot study of a digital 1-Minute Walk Test as a novel decentralised endpoint in pulmonary hypertension research
Published: 30/09/2023
SARAhome video assessment deployed in pan-European ataxia observational study
Published: 22/08/2023
Accelerometer-derived sleep measures in idiopathic dystonia
Published: 15/08/2023
A global neuronopathic Gaucher disease registry (GaRDIAN): a patient-led initiative
Published: 28/07/2023
Considerations for patient and public involvement and engagement in health research
Published: 21/07/2023
Digitally enabled decentralised research: opportunities to improve the efficiency of clinical trials and observational studies
Published: 21/02/2023
Patient-led development of digital endpoints and the use of computer vision analysis in assessment of motor function in rare diseases
Published: 13/09/2022
Symptoms and risk factors for long COVID in non-hospitalized adults
Published: 27/07/2022
Development of SARAhome, a New Video-Based Tool for the Assessment of Ataxia at Home
Published: 10/06/2022
Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research
Published: 18/05/2022