A doctor at Sheffield Children’s Hospital has been awarded a research grant to assess services for Juvenile Huntington’s Disease sufferers.
Dr Oliver Quarrell’s study will find out the point of view of patients, carers and professionals on services available to treat and manage the condition.
“We are delighted to have been awarded this grant,” said Dr Quarrell.
“ We believe the information we gather has the potential to support future improvements
JHD starts before the age of 20 and there is no treatment at the moment that can modify the course of the disease so current services focus on managing the symptoms and supporting patients.
Sheffield Children’s NHS Foundation Trust will be working closely with the Huntington’s Disease Association – a charity which provides support to patients with the disease – and Cure Huntington’s Disease Initiative, which develops way to slow the progression of the disease.
The grant was awarded by the National Institute for Health Research under the Very Rare Diseases themed call.
Alastair Kent OBE, director of Genetic Alliance UK and chair of Rare Disease UK said: “The decision to support research into very rare diseases will delight patients and families affected by these conditions.
“Just because your condition is very rare does not mean that your needs can be ignored or sidelined.
“This announcement is a welcome acknowledgement by the NIHR of its responsibility to address the needs of all patients, and to play a role in the development of high quality healthcare for all users of the NHS, irrespective of the numbers affected.”