We’re committed to deepening and supporting research at local, national and international levels

In addition to strengthening our relationships with researchers through the work of the Research sub-committee, providing support, creating opportunities and sharing its expertise, the charity is committed to:

  • Develop national and international networks within the research community to ensure Scottish Huntington’s Association is represented in relevant forums.
  • Ensure that relevant current research activities and breakthroughs are communicated effectively by Scottish Huntington’s Association.
  • Assure the board that Scottish Huntington’s Association, through a research focused webpage, is providing information and guidance for families who want to get involved in research; sharing experiences of family members and staff who have been involved research and sharing examples of past and current research projects where Scottish Huntington’s Association has been involved.
  • Make recommendations to the board on how sub-group budget will be spent and assure the board that robust processes are in place for the awarding of funds to external organisations and individuals.

We can support your research

We are recognised at national and international levels for our expertise in the care and support of people whose lives are impacted by Huntington’s disease.

The charity is actively involved in helping to ensure strong participation in global research activities – a key element of our five year Standing Tall strategy – in addition to engaging with studies taking place at home.

Research news

Scottish Huntington’s Association is one of the founding partners of HD Buzz, a global news site focusing on the latest research news. Written by scientists in non-scientific language for everyone in the Huntington’s community and for other researchers working in the field.

Projects supported

Take a look at some of the projects we have supported.

‘Let’s talk about Huntington’s disease’ – University of Aberdeen 2019

Exploring the complexities of safe postural management for people in Scotland with a diagnosis of Huntington’s disease – Queen Margaret University 2021

What is the role of  proprioceptive and tactile feedback on functional movement in Huntington’s disease? – Queen Margaret University 2022

How you can get involved

There are many research studies currently underway offering opportunities for families and individuals to participate. Below is information about specific studies and websites where you can explore new opportunities.

If you want to learn more about taking part in research, see ‘What our researchers and families say’. You can also ask your HD Specialist for specific information and advice.

Participation is always voluntary and will not affect the services or support you receive from Scottish Huntington’s Association.

Current studies recruiting in Scotland:

To register your interest in studies on neuroprogressive disease and dementias, visit:
NHS Research Scotland

The European Huntington’s Disease Network provides a useful portal for research opportunities. Check out the ‘HD Research’ section:
EHDN

More information is also available at HD Trial Finder.

Apply to our Impact and Engagement Fund

The Scottish Huntington’s Association Impact and Engagement Fund launched in 2024. It has been made possible through a generous legacy donation in support of the charity’s commitment to supporting research about Huntington’s disease through the provision of Impact and Engagement funding for academic and practitioner researchers and students working in Scotland.

The charity is keen to support impact and engagement activities that are innovative, effective and high-quality; that disseminate new knowledge; and that can be demonstrated to be of benefit to the Huntington’s community in Scotland and beyond. The Huntington’s community includes anyone who is affected by Huntington’s disease, including those who support and care for Huntington’s families.

Support will be provided for impact from research across any discipline with no restriction as to methodology but excluding large scale drug trials and observational studies.

Proposals should be for a distinct piece of impact or engagement activity with an identifiable outcome of its own.

Academic and practitioner researchers and students at any career stage, who have produced or are carrying out the research in question.

Applicants must be working or studying in Scotland at a university, further education college, or health or social care setting (third sector organisation, statutory or private organisation). Applicants’ employment contract or supervisory arrangements for students must extend for at least two months beyond the end of the activity for which funding is requested.

All activities must involve engagement with the Huntington’s community in Scotland and share research findings with a wider non-academic audience in an accessible manner way. This might include, but is not limited to:

  • Travel, accommodation, subsistence and fees for conference or seminar attendance at Scottish, UK or international level.
  • Knowledge exchange, public engagement and impact activities.
  • Developing materials such as film, audio or printed materials.
  • Delivery of education or training workshops.
  • Creation of a website or digital resource.

A maximum of £2000 is available on the condition that all costs are fully justified.

Activities relating to large scale drug trials and observational studies, research activities such as recruitment of participants and data collection and analysis.

You are ineligible to apply if you have received funding from this fund in the past 24 months.

Funding cannot be used to fund salaries, honorariums, scholarships, equipment costs, manuscript preparation and publication, indirect overhead costs such as desk fees, or insurance.

Applications will be assessed by reviewers appointed by the Board of Trustees of Scottish Huntington’s Association who may approach specialists to act as peer reviewers as necessary. Criteria for assessment will include:

  • Quality and significance of the proposed activity.
  • Expected outcomes and capacity to generate benefit for the Huntington’s community.
  • Suitability of the methodology or approach selected.
  • Feasibility of the timescales and scope proposed.
  • Match between the applicant and the activity proposed.
  • Ability to demonstrate the effectiveness of the activity.
  • Appropriateness of the level of funding requested.

If assessors require additional information they will contact applicants during the review process.

The application portal remains open at all times and applications will be considered in October and April each year with deadlines as set out below. Projects should be scheduled to begin with the results deadline in mind; awards must be taken up and work initiated within 6 months of the date of the award. Retroactive applications will not be accepted.

Submission Deadlines: 31 March 2025

Result Published: 30 April 2025

Successful applicants and their organisations will be informed together as promptly as possible.

The period of award should be clearly specified and may be up to 9 months.

All applications require institutional/organisational sign-off by a person with authority to sign on behalf of an institution in the relevant circumstances.

Student applicants must have the formal approval of their supervisor, who must also co-sign the end of award report.

Any ethical approvals for research work undertaken must be complete and confirmed by applicants and supervisor/manager at the time of application.

Funds provided by Scottish Huntington’s Association under this scheme may be used only for the purposes specified and may not be used later than the end-date specified in the application. All funded activities must take place within the period of the award.

Funds will be paid to the applicant’s institution or employer only after the applicant and their institution have formally accepted the award and issued an invoice for payment by Scottish Huntington’s Association. We will endeavour to make payment as promptly as possible.

Only one application from the same applicant can be considered at any one time.

If an application is rejected, it may be revised and resubmitted at a subsequent submission date if the applicant remains eligible. Scottish Huntington’s Association regrets that it is not possible to provide feedback on unsuccessful applications.

An end of award report is a condition of funding and should be completed within 6 weeks of the end of the award: for students, this must be co-signed by a supervisor. An end of award statement of expenditure is also required for all award holders: this must be completed by an authorised signatory at the award holder’s institution/employer. Any unused funds should be returned to Scottish Huntington’s Association.

Award holders should notify Scottish Huntington’s Association of any change in their circumstances. Variations to the original scope and date of the award will be considered only in exceptional circumstances and should be discussed with the Scottish Huntington’s Association at the earliest possible stage.

Research Sub-Committee Members

The Scottish Huntington’s Association Research Sub-Group aims to raise the profile of Scottish Huntington’s Association and establish it as a partner in research.