Progress in our Huntington’s Disease Quality of Life measures
Galen is proud to announce we have closed data collection for the manifest Huntington’s Disease Quality of Life measure (HD-mQoL) and the proxy version (HD-mQoL-proxy).
After a rigorous process of qualitative interviewing, item generation, cognitive debriefing interviews, survey validation, and a full Rasch analysis; the first draft of the HD-mQoL along with the proxy is now complete. We hope to publish the results very soon.
A special thank you to all the patients and caregivers involved in the process, their perspective has been invaluable in capturing the devastating impacts of Huntington’s Disease. We would also like to thank our fellow HealthE-RND consortium members for their ongoing support on the project.
Galen alongside the consortium is continuing the development of other Huntington’s disease measures; pre-manifest (HD-pQoL)and manifest companion measure (HD-mQoLc).