The psychological experiences of using Pre-implantation Genetic Testing (PGT) in the context of Huntington’s disease.

Lancaster University

About the study:

The purpose of this study is to understand the experiences of those who have personally undergone Pre-implantation Genetic Testing (PGT-M) in the process of starting a family.

This is so that researchers can:

• Understand the experiences of a person who, at the time of using Pre-implantation Genetic Testing (PGT-M), was either gene-positive or at risk of Huntington’s disease
• Understand the experiences of a person whose partner was gene-positive or at risk of Huntington’s disease at the time of using Pre-implantation Genetic Testing (PGT-M)
• Understand the demands of using this option and how these may evolve
• Identify key themes across participants and share findings about using this reproductive option

 

Who can take part:

• Adults aged 18 and over
• Individuals who have personally undergone Pre-implantation Genetic Testing (PGT-M), regardless of whether this resulted in the birth of a child or not
• Individuals who were at-risk of Huntington’s disease, or gene positive, at the time of using Pre-implantation Genetic Testing (PGT-M)
• Individuals who were the partner of the person who was at risk or gene positive at the time of using Pre-implantation Genetic Testing (PGT-M)

Exclusion criteria:

Unfortunately, the current study cannot investigate those actively going through Pre-implantation Genetic Testing (PGT-M).

 

How to get involved:

Please contact the researcher, Kevin Power, at k.power2@lancaster.ac.uk if you would like to get involved.

Participants will be asked to complete a 60–90-minute online interview via Microsoft Teams.

When the interview has been completed, participants will receive a £20 voucher as a thank you.

Study closes on 31 December 2026

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Experiences and perceptions of remote physiotherapy for neurological patients and physiotherapists: a sequential study

Robert Gordon University

 

About the study:

Researchers are conducting a UK-wide study exploring the use of remote (tele-rehab) physiotherapy for individuals with neurological conditions such as Huntington’s disease.

 

Study aims:

This study aims to examine how remote physiotherapy is currently used and how users experience it. Its findings aim to contribute to a better understanding of the benefits, challenges, and overall effectiveness of remote physiotherapy, to inform future service delivery and improve accessibility and quality of care.

 

Who can take part:

This study is open to neurological patients aged 18 and over who have accessed physiotherapy for their diagnosis.

 

How to get involved:

If you would like to participate in this study, please get in touch with the researcher, Gloria, via email at g.nyarko@rgu.ac.uk

Gloria will then send over an online survey, which will include a mix of closed and open-ended questions to capture both measurable trends and more in-depth personal experiences. It will take approximately 15 minutes to complete.

All responses are collected anonymously to ensure confidentiality. The researchers will analyse the data using descriptive statistics for quantitative responses and thematic analysis for qualitative insights.

Afterwards, there is an optional follow-up interview, which would take place either online or over the phone. Participants who choose to be interviewed will receive a £25 Amazon voucher.

 

Recruitment advertisement

Study closes on 30 July 2026

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Exploring the views of people affected by Huntington's disease on an AI interface for the future delivery of a psychological intervention to improve mental health

Lancaster University

About the study:

Many people affected by Huntington’s experience high levels of anxiety. While some psychological support is available, most talking therapies are currently offered face-to-face, and there aren’t many options that have been tested specifically for people with Huntington’s.

This study is exploring whether a new kind of support - an AI-based chat tool - could help. The idea is to create something that people can use online, in their own time, without needing to meet a therapist one-to-one. This could make it easier to access reliable information and emotional support when it’s needed.

Study aims:

This study aims to:

• Find out how easy the current version of the tool is to use
• Understand what people think about using an AI tool for information and support around Huntington’s and mental health
  

Who can take part:

Participants wishing to get involved in this study must be:

• Pre-manifest or manifest Huntington’s disease
• Able to access Microsoft Teams and screen share (support can be provided)

How to get involved:

Participants who wish to get involved should contact the researcher, Hannah, via email at h.gotheridge@lancaster.ac.uk

Hannah will then invite 10 - 14 people who carry the Huntington’s gene (whether or not they currently have symptoms) to take part in an online session via Microsoft Teams. Participants don’t need to be currently anxious to take part, as at this stage, researchers are interested in a range of views.

During the session, participants will try out a prototype (early version) of the AI tool. They’ll be asked to share their thoughts aloud as they use it, for example, what feels clear or confusing.

Afterwards, participants will have a further conversation with researchers to share more about their experience and opinions.
The AI tool used in this study is designed to be safe and trustworthy. It only uses carefully checked information, keeps all personal data private, and does not take information from the internet. However, for this current version, researchers will not be asking participants about their mental health specifically, just about their thoughts as they use the AI tool.

Researchers will look at what participants say during the session and in the follow-up conversation to identify common themes. This will help to improve the tool and decide how it could be developed in the future.

Participants will receive a £25 Amazon voucher as a thank you.

Recruitment advertisement

Study closes on 31 May 2026

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Development and validation of Huntington's disease-specific quality of life tools

Galen Research Limited

About the study:

Galen Research Limited would like to get the views of people whose partner lives with Huntington’s disease on a Quality of Life questionnaire they are developing.

Who can take part:

Researchers would like to hear from partners of someone who has had a predictive test for Huntington's disease, tested positive, and is currently well.

How to get involved:
For more information or to sign up please call 0161 7019136 or email genetics.research@mft.nhs.uk

This study closes in September 2026.

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Attitudes towards Huntington’s disease genetic testing

Deciding whether or not to go through genetic testing for Huntington's disease is a difficult decision. That’s why a team of researchers (Professor Simona Botti at the London Business School, Dr. Selin Goksel at Vrije Universiteit Amsterdam, and Dr. Nazli Gurdamar-Okutur at Koc University) has created a research study which aims to understand the psychological consequences of testing for Huntington’s disease. 

What does it involve?

The study consists of filling in a short online survey that takes approximately five minutes.

Who can take part

The researchers are looking for individuals who have already started developing symptoms of the Huntington’s disease. The survey includes several questions assessing participants’ current psychological wellbeing. The researchers will donate £2 for each participant who fills out the survey completely to the Huntington’s Disease Association.

How to get involved

If you are interested, please complete the survey

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