Applications are now open to join the PaLaDIn Patient and Caregiver User Group (PCUG).
TREAT-NMD is currently working as part of project PaLaDIn to develop a platform called the Interactium® that will allow registries to overcome the significant challenges of collecting patient-reported outcomes alongside the TREAT-NMD datasets.
Patient input will be a vital part of PaLaDIn, and we are excited to announce that applications for expressions of interest are now open to join the PaLaDIn Patient and Caregiver User Group (PCUG). We are looking for patients and caregivers with a lived experience of a neuromuscular disease to join the PCUG to contribute to the development of patient-centred resources within the PaLaDIn project.
Members of the PCUG will be invited to provide a patient or caregiver perspective on the activities of PaLaDIn including but not limited to:
• Support the development of the PaLaDIn Interactium® data platform through
engagement and user testing activities
• Educational resources
• Feedback on toolkits
• Knowledge translation (the process of moving research findings into practical
application to improve healthcare delivery and patient outcomes)
• Attendance and participation in planned workshops
Members of the PCUG will be reimbursed for their time and commitment in line with National Institute for Health and Care Research (NIHR) recommended rates (for further information see https://www.nihr.ac.uk/paymentguidance-researchers-andprofessionals).
Patients and caregivers who are interested in being part of the PCUG, can complete the expression of interest form here before Friday 28th November.
More information: https://www.project-paladin.eu/invitation-to-join-the-paladinpatient-and-caregiver-user-group-pcug