UCL HUNTINGTON’S DISEASE RESEARCH

INFORMATION FOR SCIENTISTS, CLINICIANS, PATIENTS, RELATIVES AND CARERS

UCL HUNTINGTON’S DISEASE RESEARCH

FREQUENTLY ASKED QUESTIONS ABOUT HD CLINICAL RESEARCH

What is clinical research?

Clinical research is research involving patients directly with things like blood tests, clinical tests, psychology tests, brain scans and trials of new treatments.

There is plenty of research also going on at UCL (University College London) and elsewhere looking at HD in the laboratory but this site concentrates on research that involves HD patients and their families and carers.

Who can take part in HD clinical research?

Each trial has its own set of requirements for participants. Most trials require patient volunteers and entry depends on things like genetic test results, disease stage (a measure of how advanced someone’s symptoms of HD are) and other features.

Some studies also require volunteers who don’t have the abnormal HD gene, to be used as control subjects — that is, subjects whose results are compared with patients’ results to see what the important differences are.

When patients volunteer for studies, we often invite their husbands, wives, partners or relatives of patients to volunteer as control subjects.

Do I have to get involved in research?

No. All research participation is entirely voluntary. You will never have to take part in any research you are not entirely happy with. You will always be given as much written and extra information as you need before being asked to take part in any study.

And you should never worry about declining to take part in a study — doing so will never have an adverse effect on your clinical care.

What if I change my mind?

You are free to change your mind about taking part in research at any time, even after you have signed a consent form or started the study assessments or treatments. Withdrawing from a study will never have a negative effect on your clinical care.

How do I know the research is safe?

All research at UCL/UCLH is approved by the regional or national Ethics committee as well as UCL/UCLH Research and Development team. Any risk to you will be explained fully before you agree to take part.

Can I get paid to take part in research?

Most of our studies have funding to repay any travel, accommodation and meal expenses that you incur as a result of participating. We ask that you keep receipts so that we can arrange the refund.

In general, patients with HD or the HD gene cannot be paid cash incentives, for ethical reasons. Some studies do offer cash incentives to control subjects. These will be mentioned in the information sheets given to you before you agree to take part.

How is my information stored?

We take patient confidentiality very seriously, especially with patients who have HD, carry the HD gene or are at risk of HD. All our staff are strictly trained in patient confidentiality.

All information about study participants is held on secure databases that can only be accessed by authorised people, and identifying information is never shared with anyone without your permission. All information is held in accordance with the Data Protection Act 1998.

Who pays for HD clinical research?

Funding for HD clinical research at UCL comes from a number of sources, including charities (like CHDI, the Wellcome Trust and the HD Association) and government organisations (like the Medical Research Council and the Department of Health).

See the Funding page for more information.

The valuable combination of clinical services and research is made possible by the close links between The National Hospital for Neurology and Neurosurgery (which is part of UCLH NHS Trust) and the Institute of Neurology (which is part of UCL).

Updated January 11, 2010