AT Clinical Research Network
The AT Clinical Research Network is a valuable network that was set up by the AT Society (UK) and the A-T Children’s Project (US) as a way for researchers, clinicians and therapists to keep in touch with latest news on AT research, treatments, trials, funding calls and conferences. The Network sends out short email bulletins and organises talks and conferences with AT experts. If you would like to be added to the mailing group to receive a regular copy, please click here: [email protected]
Summaries of some of the AT-CRN meetings can be found below.
Neurodegeneration in AT and how to exploit this for therapeutic benefit. Sept 2024
We were pleased to hold an important scientific panel discussion on the basis underlying neurodegeneration in AT and how to exploit this for therapeutic benefit. It was a stimulating and inciteful discussion with some of the very best AT minds in the world, sparking new ideas that participants will be able to pursue in their research into this complex condition.
Thank you to the speakers Sam Nayler, Peter McKinnon, Tanya Paull, Martin Lavin, Ernst Wolvertang, Svetlana Khoronenkova, Vincenzo Costanzo, Kim Chow and John Skidmore, and to Howard Lederman for chairing the meeting, and everyone who joined us. Your contributions into AT research continue to be exceptionally valuable.
A layman’s summary of the discussion can be found here
AT Clinical Trials Summary
There are some encouraging clinical trials happening now in the AT scientific world, aimed at slowing the progression of AT. In 2021 we organised a clinical research conference with AT scientists, clinicians and representatives from pharmaceutical companies to evaluate the treatments and assess their potential for individuals with AT. The summary of this meeting can be found here
Professor Penny Jeggo has also created a useful video to help people affected by AT to understand the status of these trials and help to evaluate them and the data. You can watch the video here
Please also go to https://atsociety.org.uk/research/clinical-trials/ for a more up to date position on the trials.
The Impact of Covid on people with AT
In May 2021, the AT Society organised an international AT-CRN meeting to focus on what was known at the time about how people with AT have been affected by Covid 19. It was attended by clinical and scientific AT experts.
Prior to the meeting, an international survey was conducted to gather data provided by immunologists on individuals with AT who had been known to be affected by Covid 19. The findings showed that only a small number of people with AT had experienced Covid at that time. All agreed that it is unclear if this data represents a lower prevalence of severe disease than in an equivalent subset of the general population, since the individuals are young, and age is the major risk factor for severe disease.
Vaccination is recommended for all individuals with AT since the risk from side effects is very low, compared to the danger of Covid 19 infections. There is no evidence that AT individuals should be at increased risk for any known vaccine side effects, and there is no evidence at this time that any of the licensed vaccines are better or worse than the others, though differences may become apparent as long-term data are collected.
The overall summary was that the data suggests that people with AT are not at greater risk of severe or life-threatening infection from Covid-19. It seems no worse for them than for other people of the same age.
When well, individuals with AT should follow the local recommendations for Covid precautions, but generally do not need to be more cautious. Of course, individuals with specific problems should seek guidance from physicians who know them. They can also always contact [email protected] if they have specific worries or concerns.
Although some parents felt concerned about the lifting of pandemic restrictions, returning to normal family, school, college, work and social life was viewed as being a good thing for the mental and physical health of people with AT and their families.
