Exeter multidisciplinary Huntington’s disease clinic
The Exeter multidisciplinary Huntington’s disease clinic is based at the Royal Devon and Exeter hospital in the medical outpatients department. This clinic is undertaken by a number of health care professionals all of whom have a specific interest in Huntington’s disease. This is a regular clinic in which the main aim is to ensure that patients and their family suffering from Huntington’s disease have access to a supportive network including a Consultant Neurologist (Tim Harrower), Genetic Counselling , Huntington’s Disease Association Care Adviser (Charles Whaley), Huntington’s disease research nurse (Sarah Irvine) and access to consultant psychiatry and consultant psychology if required.
Although the clinic is hospital-based, it is the aim of the clinic to ensure that patients requiring support in the home environment do receive such support. The clinic also allows for review of medications to ensure that treatments are optimised and customised for a particular patient at a particular time in their illness.
As we believe good treatment is based upon access to knowledge and latest developments in Huntington’s disease, a major element of the clinic revolves around ensuring research is undertaken via this clinic.
Currently a massive programme of enrolment of patients suffering from Huntington’s disease is underway in which we invite people to take part in a global study of Huntington’s disease (Enroll-HD) – see Research Information Para 3 below. As a research group with a special interest in Huntington’s disease we are involved in updates annually and also are active at a regional and national level to ensure that any new therapies that are requiring trialling are considered and made available to our patients who would like to be considered for enrolment in any cutting edge research trials.
Peninsula HD Clinic
Plymouth Huntington’s Service
The Plymouth Huntington’s Service is a community service that supports individuals with a diagnosis of Huntington’s Disease, and their families, to adapt to the changes in their Huntington’s Disease. Led by a dedicated Nurse and support staff the team can enlist services to help with patients everyday living issues. Current Nurse is
Andrew Parkinson 017512 434535
Plymouth Support Group
The Plymouth Support Group meet every other week at Mount Gould Local Care Centre.
Further details can be found Here
The following sites relate to current research progress – click on links below
1) UCL Huntington’s Disease
This site aims to bring together information about our research projects in Huntington’s disease (HD) for patients, carriers of the HD gene, carers, families, friends, scientists and health professionals. Clinical research in Huntington’s disease is entering a new era. We are already running clinical trials into treatments that may slow down progression of the disease. There are many new treatments that have been shown to be effective in animal models of HD and are waiting to be tested in humans.
Through the Huntington’s Disease Multidisciplinary Clinic of the National Hospital for Neurology and Neurosurgery, we are already running a number of studies to determine the best measures of disease progression and expect to be in the front line when human treatment trials begin in earnest.
2) The HD Buzz site presents HD research progress in an easy to understand format hdbuzz.net
Enroll-HD will be the world’s largest observational study for Huntington’s disease families
It is a resource for the entire HD community, including patients, families, patient advocates, clinicians and other healthcare professionals, researchers, and anyone else who has a connection to HD. The study is designed to be a clinical research platform that will enable healthcare professionals, scientists, and families affected by HD to work together towards an improved understanding of HD and better care and new effective treatments for HD patients.
The study builds upon and unites two successful studies: COHORT in North America and Australia, and REGISTRY in Europe. Enroll-HD is also adding new participants from Latin America and New Zealand, and possibly additional regions in the future.
The first participant joined Enroll-HD on July 26th 2012 at the University of Tennessee Health Science Center in the United States.
Contacts for the scheme
Exeter – Sarah Irvine 01392 406979 or email Sarah.firstname.lastname@example.org
Plymouth – Jemma Inches 01752 432845 or email email@example.com
Liskeard Jo Parnell 01822 813080 or email firstname.lastname@example.org