What is the DDD study?

Map of the UK showing locations of the NHS Regional Genetics Services

Locations of the Regional Genetics Services

The Deciphering Developmental Disorders (DDD) study aims to find out if using new genetic technologies can help doctors understand why patients get developmental disorders. To do this we have brought together doctors in the 24 Regional Genetics Services, throughout the UK and Republic of Ireland, with scientists at the Wellcome Trust Sanger Institute, a charitably funded research institute which played a world-leading role in sequencing (reading) the human genome. The DDD study involves experts in clinical, molecular and statistical genetics, as well as ethics and social science. It has a Scientific Advisory Board consisting of scientists, doctors, a lawyer and patient representative, and has received National ethical approval in the UK.

The DDD study is jointly funded by the Health Innovation Challenge Fund - a parallel funding partnership between the Wellcome Trust and the UK Department of Health - and the Wellcome Trust Sanger Institute, and is supported by the NHS National Institute for Health Research.

Over the next few years, we are aiming to collect DNA and clinical information from 12,000 undiagnosed children in the UK with developmental disorders and their parents. You can download a PDF copy of the Family information brochure here.

Dr Helen Firth, Consultant Clinical Geneticist at Addenbrooke's Hospital, Cambridge, says:

"Deciphering Development Disorders offers a win-win to patients, clinicians and scientists alike. It could significantly improve our understanding and management of these rare conditions and provide new avenues of research into treatments for scientists to pursue."


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