Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what research his Department has commissioned on Ehlers-Danlos syndrome.

The Department has not commissioned any research specifically on Ehlers-Danlos syndrome.

In March 2014, the Government launched the National Institute for Health Research (NIHR) BioResource to provide a national cohort of healthy volunteers, patients and their relatives who wish to participate in experimental medicine research, and are willing to provide clinical information and samples that will enable them to be recalled for specific studies. The initial focus for the BioResource includes rare diseases. These studies will have the potential to rapidly advance the understanding of disease mechanisms, identify potential drug targets, and improve insight into the therapeutic potential and limitations of existing and emerging therapies.

A current NIHR BioResource study is investigating the genetic basis of rare inherited connective tissue conditions, mainly the Ehlers-Danlos syndromes and those with overlapping phenotypes, which includes familial thoracic aortic aneurysm/dissection.