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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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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