International Neuroimaging Collaboration for Ataxia-Telangiectasia
Research type
Research Database
IRAS ID
273438
Contact name
Robert Dineen
Contact email
Research summary
International Neuroimaging Collaboration for Ataxia-Telangiectasia
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
20/WM/0050
Date of REC Opinion
24 Feb 2020
REC opinion
Favourable Opinion
Data collection arrangements
Data will be collected from two sources:
1) Anonymised data from existing research datasets. We will collect the brain MRI, clinical and anonymised demographic data from the research institution hosting the original study. These datasets will all have been collected as part of research ethics committee approved research protocols with participant or parent / guardian consent for data collection.
2) Existing routinely acquired clinical data (brain MRI, clinical and demographic data) from hospitals specialising in the care of people with A-T. These data, which were acquired as part of routine clinical care, will be anonymised at the local institution prior to transfer.
Data will be transferred under the auspices of a research data transfer agreement. Where available as part of existing research datasets, anonymised healthy volunteer data will also be collected.
Research programme
We will make the collated anonymised dataset available to the researchers who have contributed data, and where individual institutional data transfer agreements allow, will make the anonymised data openly available as a resource to bona fide researchers around the world.
Research database title
International Neuroimaging Collaboration for Ataxia-Telangiectasia
Establishment organisation
University of Nottingham
Establishment organisation address
University Park
NG7 2RD