Research Survey: Exploring physical activity in people with rare neurological conditions

The PARC (Physical Activity for people with Rare neurological Conditions) team would like to invite people living with rare conditions to participate in the following survey that aims to explore physical activity in their life. The ataxias are one of the groups of neurological conditions included in the PARC study and there are two Ataxia UK representatives involved in the project.

The survey will take approximately 15 minutes. This study has been approved by the Research Ethics Committee of School of Medicine, Cardiff University (approval number: 19/60). This survey is also available for the carers and/or family members of people living with rare conditions.

If you’re a person living with a rare condition and would like to tell us about your experience of being physically active, please click on this link: https://opinio.ucl.ac.uk/s?s=62881

If you are the carer and/or family member of a person living with a rare condition, and you’d like to tell us about your experience of supporting the person you care for in being physically active, please click on this link: https://opinio.ucl.ac.uk/s?s=62892

Many thanks,

The PARC Team

National Hospital for Neurology & Neurosurgery, UCLH, and collaborators

Research survey: Patient attitudes to genome editing for prevention of heritable disorders: Social and Ethical implications

You have been invited to take part in a research study conducted by University College London (UCL). The study aims to explore the opinions and knowledge of those in heritable disease communities regarding genome editing and its applications.

This research is in the form of an online survey. The survey will explore the different aspects of the technology itself, as well as its applications in a medical setting for the treatment of heritable disease. The study will also explore the attitudes of people with experience of heritable diseases towards the introduction of genome editing in embryos for correction of mutations.

We are looking for a variety of people within these communities, those affected and also their family members. Additionally, anyone who is involved in the community but does not have a family member affected is also welcome to join.

You can find the survey here. The survey can be completed via the weblink on smart phones, on laptop or desktop and should not take more than 15 minutes to complete. We really hope to broaden the discussion to allow all disease communities to be heard. Your time and input are truly appreciated.