Huntington’s Disease Research

Our Huntington’s disease research team works to understand more about the disease and help patients from all over the UK.

We are currently part of a large international study which aims to understand more about the natural course of Huntington’s disease and which factors, other than the Huntington’s disease gene, influence its onset, presentation and course.

More than 10,000 people across Europe are part of the study and it is an option for family members. For those who are involved it may provide an opportunity to enroll in other studies and intervention trials.

The project is part of a much larger European Huntington’s Disease Network sometimes called Euro-HD.

An example patient journey

Each patient who comes to us will have their own experience but here is an example of one patient journey:

A patient who is at risk for Huntington’s disease comes to the adult genetics clinic for predictive genetic testing for the Huntington’s disease gene.

Unfortunately, the result shows that the person has inherited the gene but fortunately is not yet affected.

During one of the clinic appointments the patient asks about any research related to the disease.

Dr Oliver Quarrell, Consultant Clinical Geneticist, explains a little about the Euro-HD study which involves spending one afternoon a year with the research team.

He then sends a referral letter to the clinical research nurse at the Royal Hallamshire Hospital.

The research nurse sends the patient a letter and some information sheets which explain the study in more detail. After a couple of weeks the patient receives a telephone call from the research nurse to ask if they would like to be involved in the research.

They then receive a letter offering an appointment for a few months time at the next available research clinic of their choice.

About six to eight months after the clinic the patient is contacted by then research nurse who offers them an appointment for their yearly follow-up visit.