Researchers need your help to discover how a digital platform might support people with rare neurological conditions to keep active

Clinical researchers from University College London Hospitals (UCLH), NHS, together with partners across the UK are preparing a grant application to develop a self-management intervention for people with rare neurological conditions to help them keep physically active. This is a continuation of the PARC (Physical Activity for people with Rare neurological Conditions) project that Ataxia UK has previously been involved in.

Your participation in this study will help digital design agency Bit Zesty to come up with a digital solution could support the needs of people with rare neurological conditions including their carers/families. The findings will help to write a strong funding proposal to develop the intervention. If you take part in the study, you will receive a £25 Amazon voucher as a thank you. The interviews will be held between Monday, 10th and Friday, 21st of February. See here for more information on how to take part.

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.