More than a Yes or No: Exploring how people (and the families of people) with lived experience of rare disease understand and experience clinical trials

Newcastle University

About the study:

Researchers from the LifeArc Centre for Acceleration of Rare Disease Trials at Newcastle University want to understand how people living with rare diseases, and their families and carers, hear about, understand and experience clinical trials.

This is to better understand how trial opportunities are communicated and understood, and researchers will use findings to co-create a patient-informed toolkit which will aim to improve trial communication in later phases.

They would like to speak with people who have:

• Taken part in a clinical trial
• Been invited to take part in a clinical trial but decided not to
• Wanted to take part but could not
• Never heard about a trial relevant to their condition

 

Who can take part:

• Adults aged 18 and over who live in the UK
• People living with a rare disease, or a parent or carer for someone with a rare disease
• People (or the person you provide care for) who have a clinical or genetic diagnosis of a rare disease

 

How to get involved:

Please contact the researcher, Dr Basma Salem, at basma.salem@newcastle.ac.uk if you would like to get involved.

Participants will be asked to complete a 45–60-minute interview either over the phone or online. If you would like to, you can share up to three photographs that represent your experiences, but please note that this is optional.

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

Recruitment advertisement

Study closes on 01 September 2029

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A survey on support needs for preimplantation genetic testing (PGT-M)

University of Sheffield

About the study:

PGT-M is a form of IVF in which embryos are tested for an inherited condition before being transferred to the womb, giving couples the option of having a child who has not inherited the genetic condition in their family.

Researchers at the University of Sheffield are carrying out a survey to understand the experiences of people who have used, or have considered using, preimplantation genetic testing (PGT-M) in the UK via the NHS.

This study aims to:

Develop and test a better package of support for people undergoing PGT-M on the NHS.

Who can take part: 

This survey is open to everyone who has been through the PGT-M journey, not only the person who had the physical treatment, but also the partner, co-parent, or supporting person, regardless of whether or not you ultimately went through the process.

How to get involved:

Taking part in this study means filling out an anonymous online survey. It will take approximately 10 minutes to complete.

Click for survey

All participants will be entered into a prize draw for the opportunity to win a £50 shopping voucher.

Recruitment advertisement

Study closes on 17 August 2027

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Preparing for the end of life in Huntington's disease: Experiences of families and carers

University of Leicester

About the study:

Caring for someone in the later stages of Huntington’s disease can be challenging, and many carers experience burnout, feel unprepared, and struggle to find the right support.

With Huntington’s being a rare condition, health and social care professionals may not always be familiar with the needs of people living with the disease and their carers. This can leave families feeling hesitant to ask for help until they reach a crisis point.

Understanding what helps or hinders families during this period can help to inform and guide them to find better support from health and social care services.

This study will explore how family members understand and experience the changes in the condition, and what steps they take to aid preparedness when caring for a relative throughout the end stage.

 

Who can take part:

Researchers would like to speak to adults aged 18 and over, who can take part in an interview conducted in English, and:

• Are currently caring for, or have recently cared for, a family member who has / had Huntington’s disease and is / was in the ‘end stage’ of the condition
• Provide or provided most of the day-to-day support for that person

 

How to get involved:

Please contact the researcher, Catherine Lyon, at cl527@leicester.ac.uk if you would like to get involved.

Participants will be asked to complete an interview either over the phone or online and will receive a £25 Amazon voucher as a thank you.

 

Study closes on 31 January 2027

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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

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