**6. Final remarks**

That's why a number of voluntary patient organizations and support groups have sprung up in various countries around the world, working closely with scientific and medical experts to find effective therapies to improve quality of life and provide education and support for families affected by AT. The most active internationally are the AT Children's Project from the USA and the AT Society from the UK. In October 2014, a clinical guidance document on the diagnosis and treatment of ataxia telangiectasia in children was published by the UK AT Society [128]. To quickly make data on people with AT available to researchers and doctors for analysis, the Global AT Family Data Platform was launched in July 2016 [159]. In parallel with the Platform and voluntary patient organizations, work is underway on an international registry of patients with AT. The registry will include baseline and longitudinal data provided by clinicians and clinical centers that treat people with AT. Analysis of data from growing patient registries [128, 159] will inform natural history, improve disease management, and aid therapy development.
