We are writing to all UK parents of youngsters with classic AT, aged 12-18 years old (and still in secondary education) to invite you to the rescheduled N-HAT virtual focus group to give you the opportunity to input your views, ideas and experience.
The study is now reaching its final stage and is titled The Natural History of Ataxia-Telangiectasia (N-HAT). A systematic review of clinical/scientific literature was published in March 2022 and the researchers now want to determine ‘Core Outcome Sets’ that can be used to evaluate the effectiveness of any new treatments. More detailed information about the N-HAT study can be found in the attached information leaflet for parents/carers.
We really want to hear your views. We want to know what you think of the results so far, and we need your views on the suggested ‘core outcomes’ for future A-T research. As we have been unable to arrange a face to face meeting to discuss all this with you, we invite you to participate in the first of two virtual focus groups using ZOOM on September 14th between 7 pm and 8:30 pm. A second focus group session will be arranged at a later date to gather the views of young people living with AT age 12 and over.
Participation in these sessions is entirely voluntary, and all information gathered will remain confidential. If you would like to participate in the focus group, please read, sign, and return the two consent forms below via email to [email protected] and register your interest via this link: https://us06web.zoom.us/meeting/register/tZ0kfuqgrjkpGN3vXgGeQPWcB8N7YQtXtDxK
We believe the N-HAT study is important because its primary aim is to better understand the A-T process, its response to treatments and more accurately map the course of A-T from childhood into adulthood. It is hoped that the data from the study will be used to help recognise different patterns of presentation and progression of A-T in individuals, anticipate complications more accurately (to keep one step ahead) and help professionals to design clinical trials in a more targeted way. It will also help to identify the best ages for treatment intervene.