International A-T Registry
Research type
Research Database
IRAS ID
205333
Contact name
William Davis
Contact email
Research summary
International A-T Registry
REC name
South Central - Berkshire Research Ethics Committee
REC reference
17/SC/0075
Date of REC Opinion
4 Mar 2017
REC opinion
Favourable Opinion
Data collection arrangements
The purpose of this study is:
• To establish an international registry for A-T and closely related conditions
• To make data from the registry available to clinicians and researchers seeking to understand and develop new and improved treatments for A-T and related conditionsResearch programme
There is currently no database collecting detailed information on the symptoms and clinical progression of A-T and related conditions from more than one centre. The data on this registry will improve our understanding of the conditions and the symptoms they produce. This in turn could lead to improvements in patient care and aid the development of new therapies and drugs. It will also facilitate the identification and recruitment of participants in future clinical trials. The data will be of particular interest to clinicians with a specialist interest in AT as well as to researchers trying to better understand the biological process underlying the condition with a view to developing treatments. In this context, and also for its potential in identifying potential participants for clinical trials, the data is also likely to be useful to pharmaceutical companies. For the 20,000 or so people with A-T around the world, the database will mean we start to have some proper answers to their questions about just how common particular features of the condition are, and how they are likely to progress over time.
Research database title
International A-T Registry
Establishment organisation
Ataxia-Telangiectasia Society
Establishment organisation address
Rothamsted Research
Harpenden
Hertfordshire
AL5 2JQ