All journal news

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Recommendations to address respondent burden associated with PROs

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A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia (XLH)

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Development and usability testing of an ePRO solution for patients with inflammatory diseases in an ATMP basket trial

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SARAhome video assessment deployed in pan-European ataxia observational study

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Accelerometer-derived sleep measures in idiopathic dystonia

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A global neuronopathic Gaucher disease registry (GaRDIAN): a patient-led initiative

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Considerations for patient and public involvement and engagement in health research

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Digitally enabled decentralised research: opportunities to improve the efficiency of clinical trials and observational studies

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Patient-led development of digital endpoints and the use of computer vision analysis in assessment of motor function in rare diseases

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Symptoms and risk factors for long COVID in non-hospitalized adults

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Development of SARAhome, a New Video-Based Tool for the Assessment of Ataxia at Home

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Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research

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Patient reported outcome (PRO) assessment must be inclusive and equitable

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The Symptom Burden Questionnaire™ for Long COVID

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Impact of assessment frequency of patient-reported outcomes: an observational study using an eHealth platform in cancer patients