Patient registries are databases containing information about individuals who are affected by specific conditions and play an important role in the therapy development pathway.

Registries can:

• Identify participants for clinical trials

• Help develop care standards, to improve the care people receive

• Support specific research questions

• Provide health, genetic and other types of useful information to assist doctors and scientists

• Represent a link between patients and the research community, providing the opportunity for people to receive information directly relevant to their condition (for example, through newsletters)

The data in registries can be entered by patients themselves, their doctor or by a combination of the two and in many cases, researchers can make data access requests.

The list below shows some of the A-T patient registries which have been established around the world. Click on each logo for further details. For a more comprehensive list of the known global A-T patient registries please visit the Orphanet website. If you wish to notify us of a registry which should be included in our listing, please contact us using the email address listed at the bottom of this page.

Click on the organisation's logo to go to their web site

		The Global A-T Family Data Platform is a patient-driven effort overseen by A-T families and experts worldwide through which health, genetic and potentially other types of data about people with A-T can be shared with researchers.		support@atfamilies.org
		The A-T International Registry is a physician-driven online patient registry for epidemiological and research purposes involving patients and clinicians from 22 countries from around the world.		jo@atsociety.org.uk
		The ESID Registry provides an internet-based database for clinical and research data on patients with primary immunodeficiencies including A-T.		esid.admin@kenes.com