#8 Patient-reported experience & outcome measures

Working Group 8
WG Name	Patient-reported experience & outcome measures
WG Leads	Tanja Schmitz-Hübsch (Charité Universitätsmedizin Berlin, Germany) Bart-Jan Schuman (Friedreich Ataxie Förderverein e.V.; Germany)
WG Objectives	This WG aims to promote the role of patient report in the assessment and trials of ataxia. The prioritary aim is to define a graded catalogue of patient-reported outcome measures (PROM) focused on collecting patient perspectives on aspects of health status. Secondarily, this WG may also extend to patient reported experience measures (PREM) of health care. These instruments may serve as a standard for future clinical trials and sharing of observations at a global level. Starting from review of existing evidence and input on theoretical frameworks, the work of this WG will be directed by results obtained in each step.
WPs	Outline of planned workpackages (WP) WP 1: review of current evidence on concept elicitations and patient-reported measures ataxia and review current concepts of their validation, translation, and level of generalizability. WP 2: iterative review of results involving (multi-national) patient engagement WP 3: building expertise on defined CoI and CoU by inviting experts and networking WP 4: building evidence by re-evaluation of existing datasets WP 5: building evidence by amendment of proposed set of PROM/PREM in ongoing observational or interventional trials WP 6: writing a multicenter research project aiming to perform (multi-national) patient focus groups WP 7: building consensus by iterative report within WG, AGI, and wider community; draft of consensus recommendation

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