A year has passed since the launch of the Global A-T Family Data Platform, an effort overseen by A-T families to enable researchers and clinicians to mine large data sets and gain new insights about ataxia-telangiectasia.

So far, A-T families from 19 countries have contributed health information about their children who have A-T. The platform’s web portal has been translated and launched in English, French, German, Italian, Polish, Portuguese and Spanish, greatly increasing participation.

In addition, the collection of saliva samples for whole genome sequencing has thus far been approved in Canada, France, Italy, Poland, Spain, the United Kingdom, and the United States. Nearly 160 saliva kits have been sent out for genome sequencing, and this number is expected to increase significantly in coming months.

At this moment, the platform is being translated into Chinese while approval to collect saliva samples is being obtained in additional countries, including Germany, Brazil, Australia and China.

And, in keeping with the vision for this platform, researchers will be able to start analyzing de-identified health and genomic data in two or three months, potentially enabling new discoveries about A-T.

In addition, developers are now adding a process to encourage A-T families to return to the website regularly to keep their data updated. Furthermore, the platform will soon “push out” new questionnaires to families aimed at gathering more detailed information about specific areas of health and lifestyle, such as immunological, oncological, dermatological and educational issues faced by families who are coping with A-T.

Still other developers are adapting innovative technologies to collect new types of data from children and young adults with A-T, including information about their movement patterns captured by wearable devices and data about the composition and balance of their gastrointestinal and respiratory microbiota captured by microbiome analysis.

To see the website where A-T families are registering for the platform, please visit www.atfamilies.org.

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