Get involved in research

Scientists around the world are researching ways to slow down or prevent Huntington’s disease. There are also teams investigating new treatments to help with the symptoms. This means that there are many different types of research studies that you could potentially get involved in from clinical trials to sociological studies and surveys, all to aid in helping those affected by Huntington’s disease.

If you’d like to help in the global effort to learn more about Huntington’s disease, the below research studies are currently looking for participants. Taking part in research can be a substantial commitment so it’s important to look at what’s involved.

The below research studies are available to participate in, however, they are external to the Huntington’s Disease Association and you must contact the organisers directly to inquire about participation and for additional information.

Taking part in research studies

Neuro LTC

The Neuro LTC (long term conditions) research project aims to identify and better understand the factors that influence the care needs of people with long term neurological conditions, including Huntington’s disease. The project will identify the factors that predict levels of care and the events that can lead to an increase in care, either at home or in hospital. It will also identify the impact of fatigue on people living with Huntington’s disease.

HD-CSF

HD-CSF is an observational study with the main purpose of collecting and studying cerebrospinal fluid (CSF), the fluid that surrounds the brain and spinal cord, to help better understand what happens in the brains of people with Huntington’s disease. In the current phase, researchers want to study CSF in a larger group of people as well as measure how things change over time.

Enroll-HD

Enroll-HD is a study which aims to accelerate the development of therapies for Huntington's disease by collecting more uniform clinical data and biological samples to better understand the natural history of Huntington's. The study is building a comprehensive and valuable database of information which is available for use by Huntington’s researchers worldwide.

PARC

The Physical Activity for people with Rare neurological Conditions (PARC) at the National Hospital for Neurology and Neurosurgery (UCLH) are inviting anyone living with a rare neurological condition such as Huntington's disease to participate in a survey that aims to explore physical activity when affected by a neurological condition.

Organ donation

Some people choose to donate their organs for use by medical science after their death in order to help others. Brain donation is of particular relevance in Huntington’s disease research. To find out how you can donate your organs visit The Human Tissue Authority's website or call them on 020 7269 1900. Please email info@hda.org.uk or call 0151 331 5444 if you have any questions or to find out more.