Moving Forward Survey in Russia

Written by the Moving Forward Team on September 23th 2021

The project Moving Forward has recently started in Russia, in a close collaboration between the Orphan People and the EHA.

One of the first actions within the project was to develop an anonymous online survey to assess the perceptions and experiences about research participation among persons at risk for HD and persons with premanifest HD in Russia.

The Moving Forward team (Zaynab Umakhanova, project coordinator in Russia, and Filipa Júlio, project manager) believes that this survey will be extremely useful to guide the work in Russia and make it more meaningful to the local HD families.

The survey will be online until the end of September and everyone who is either at risk for HD or tested positive for HD but does not show symptoms is kindly asked to fill it. By completing the survey (in Russian) you will be giving us your valuable input about how the current situation in Russia regarding research participation is.