I’m pleased to report that we have already amassed health and genomic data on 265 children and young adults with A-T through our on-line Global A-T Family Data Platform. Contributing families span 25 countries, facilitated by the portal’s functionality in 10 languages.
Now, research scientists have begun plunging into these de-identified data sets, seeking discoveries both to improve the management of disease symptoms and to develop new therapies for A-T, all the while increasing our understanding of A-T. And, overseen by A-T parents from around the world, a team of distinguished scientists and clinicians on our Data Access Committee have begun selectively granting access to researchers who are planning unique data analysis projects.
This progress is only the beginning, and we know already that this data platform will have a tremendous impact. But, the more data sets we have, the better and faster will be the discoveries that emerge. We are therefore eager to continue finding and encouraging A-T families around the world to join the platform.
If you’d like to participate as either a family member or a researcher, please visit atfamilies.orgtoday. Thank you.
Brad Margus
Volunteer Chairman and Founder