#8 Patient-reported experience & outcome measures

Working Group 8
WG Name Patient-reported experience & outcome measures
WG initiators Laura Bannach Jardim (Porto Alegre, Brazil)
Jonas Saute (Porto Alegre, Brazil)
Giulia Coarelli (Paris, France)
Tanja Schmitz-Hübsch (Berlin, 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


Interested in participating in this working group?

Experts in this area, incl. ICF (International Classification of Disability and Function) and concept elicitation, are welcome to join!

If you are already an AGI member or work for an AGI partner organization, please follow this link or contact the AGI office (Not AGI-Members will be asked to apply to free AGI membership).

The first WG meeting will be on 15 April 2024, 3-4 pm CEST.

Do not hesitate to contact the AGI office if you have any questions!