Exploring adopters' experiences of adopting children with life-limiting and life-threatening conditions and their perspectives on genetic testing.

Lancaster University

About the study:

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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

Experiences of moral distress in healthcare workers caring for people living with Huntington’s Disease in UK care settings

University of Leicester

About the study:

By exploring healthcare workers’ experiences, this study aims to improve understanding of the ethical challenges involved in caring for people with Huntington’s disease. The findings may help inform service development, staff support, and organisational practice, contributing to improved care for people living with Huntington’s disease and staff wellbeing.

Who can take part:

Researchers would like to speak to those:

• Age 18+
• Currently working, or have recently been working, in a formal healthcare or social care setting within the UK (for example, healthcare services (private or NHS), residential or nursing care, or commissioned voluntary sector services)
• Whose role involved direct care of person(s) with Huntington's disease
• Who have been working, or did work, in this setting for at least 1 year
• Able and willing to talk about this experience

How to get involved:

If you would like to get involved with this study, please reach out to the researcher, Cat on ch595@leicester.ac.uk

Participants will then be invited to take part in an interview lasting 30–60 minutes. Interviews will be conducted remotely via Microsoft Teams or telephone, depending on participant preference. 

During the interview, participants will be asked open-ended questions about:

• Their experiences of caring for people with Huntington’s disease
• Any ethically challenging situations they have encountered
• How these experiences have affected them personally and professionally, and what they feel might help reduce moral distress 

Participants will not be asked to discuss identifiable details about specific individuals they support.

Interviews will be audio-recorded, transcribed, and analysed using a qualitative approach that identifies common themes across participants’ experiences. 

All data will be anonymised and stored securely in line with data protection regulations. 

Participants may withdraw from the study at any time up to two weeks after their interview. 

As discussing these topics may be emotionally challenging, participants will be reminded they can pause or stop the interview, and information about support services will be provided afterwards.

Participants will be eligible for an Amazon voucher as a thank you for their time.

Study closes on 01 November 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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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