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 a short email bulletin every two to three months and organises talks and conferences with AT experts. The latest bulletin can be viewed here. If you would like to be added to the mailing group to receive a regular copy, please click here: [email protected]
Summaries of some recent meetings can be found below.
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 December 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: Clinical Trials Summary
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
The Impact of Covid on people with AT
In May 2021, the AT Society organised an important international meeting to focus on what we know so far about how people with AT have been affected by Covid 19. It was attended by clinical and scientific AT experts from around the world.
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.
- 26 individuals across the world, with AT, were reported to have been infected by Covid 19
- Many countries reported no affected individuals with AT
- Of the 26 individuals affected, 6 were adults and 16 were under 18 yrs. old. The remaining 4 did not have an age reported.
- All had mild respiratory symptoms
- 1 individual required hospitalisation for 4 days because of acute neurologic changes
- Some individuals had a cancer diagnosis. Several had immunodeficiency and lung problems, but none were not severely affected by Covid19
- The most common symptoms were cough and fever (as observed in the general public)
- Some infected individuals with AT were on the EryDel steroid trial. Their infections did not seem to be different to those observed in people not on the trial. (Please note that being on the EryDel trial should not affect the decision to use dexamethasone in treating anyone with AT showing significant symptoms from a Covid infection)
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.
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 good news is 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 parents will feel 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