RecruitingOBSERVATIONAL

Medium to Long Term Outcomes of Selective Dorsal Rhizotomy

This study aims to understand the long-term effects of Selective Dorsal Rhizotomy (SDR) surgery on children and young people with cerebral palsy, usually 3 to 10 years after their operation. We want to see how the surgery has affected their movement and everyday life, and how it has impacted their families. If you or your child had SDR at Great Ormond Street Hospital between 2013 and 2021, and could walk before and after surgery, you might be able to take part. Taking part means filling out surveys, coming to the hospital for some checks, and some families might also be asked about their experiences in an interview. The findings will help create better information for other families considering SDR.

At a glance

Status

Recruiting

Sponsor

Great Ormond Street Hospital for Children NHS Foundation Trust

Enrolment target

Start

25 Jun 2024

Estimated completion

01 May 2026

Cerebral Palsy

What is this study about?

This important study is looking into what happens to children and young people who have had a type of surgery called Selective Dorsal Rhizotomy (SDR) to help with cerebral palsy. Specifically, we want to understand the long-term effects – usually between 3 and 10 years after the operation. Many studies look at the immediate effects, but we want to see how having SDR changes a person's life and their family's life over many years.

The main goal is to see how well they are moving and coping with daily activities, and how they feel about their lives in the years following the surgery. We will also be asking parents and young people about their experiences, reflections, and how SDR met their initial hopes. Your input is really valuable and will help us get a full picture of what it's like to live with the results of SDR over time.

The information we gather will be used to create helpful resources for other families. These resources will aim to explain whether SDR surgery might be a good choice for their child, and how to best prepare for and adjust to life after the surgery. By sharing your experience, you could help many other families make informed decisions about this treatment.

Key takeaways

Investigating long-term effects (3-10 years) of SDR surgery.
For children and young people with cerebral palsy who can walk.
Includes surveys, hospital assessments, and some interviews.
Aims to create helpful resources for other families.
Participation helps future families make informed choices about SDR.

Who may be eligible?

This study is looking for children and young people who have cerebral palsy and had Selective Dorsal Rhizotomy (SDR) surgery at Great Ormond Street Hospital (GOSH) between 2013 and 2021. Critically, to be included, they must have been able to walk (with or without help) both before and after their SDR surgery.

Participants must have been between 2 and 15 years old when they had their SDR surgery. They also needed to have had their usual check-ups before the surgery and at least one follow-up check at 6, 12, or 24 months after the SDR. We are also inviting parents of these children to take part.

Children who were not able to walk before or after their SDR surgery are not suitable for this study. Also, if a child has other muscle or bone problems that are not related to their cerebral palsy, like a recent injury, they would not be able to participate.

Quick self-check

Do you have cerebral palsy?
Did you have SDR surgery at Great Ormond Street Hospital between 2013 and 2021?
Were you able to walk (with or without help) before and after your SDR surgery?
Were you between 2 and 15 years old when you had your SDR surgery?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part, you or your child (if you are a parent) will be asked to do a few things. First, you'll complete a survey with questions about your experiences and how things are going. This survey will include some standard questionnaires about quality of life and health.

You'll also be asked to visit the hospital. During this visit, we will take some measurements and do some tests, similar to the ones you might have had as part of your regular follow-up after SDR. These tests help us understand changes in movement and function over time.

Some parents and young people will also be invited for an interview. This is a chance to talk in more detail about your journey with SDR, what you expected, and how it has impacted your life. We don't expect any medication changes as part of this study. The exact total duration for each person will vary, but typically it involves completing the survey, attending one hospital appointment, and for some, an interview.

Potential risks and benefits

Taking part in this study could offer several benefits. Your experiences will directly help create better information and support tools for other families considering SDR, allowing them to make more informed decisions. You would be contributing to a deeper understanding of the long-term effects of SDR surgery. As for risks, there are very few. The main commitment is your time for surveys, a hospital visit, and potentially an interview. You might find some questions about your experiences emotionally sensitive, but you are free to skip any questions you don't wish to answer. Your comfort and well-being are important, and you have the right to withdraw from the study at any time, for any reason, without it affecting your or your child's medical care.

Locations (1)

Great Ormond Street Hospital for Children
London, United Kingdom· Recruiting

Common questions

What is SDR surgery?

SDR (Selective Dorsal Rhizotomy) is a type of surgery on the spinal cord that can help reduce muscle stiffness in people with cerebral palsy.

Why is this study important?

This study is important because it looks at the long-term effects of SDR surgery, which helps us understand how it impacts lives many years later and create better resources for families.

Do I need to be able to walk to join?

Yes, participants must have been able to walk (with or without help) both before and after their SDR surgery to be included in this study.

Will I have to take any new medicine?

No, this study does not involve taking any new medications. It focuses on gathering information and conducting assessments.

Can I stop participating if I change my mind?

Yes, absolutely. You can choose to stop participating in the study at any time, and for any reason, without it affecting your, or your child's, medical care.

How to find out more

Deepti Chugh

deepti.chugh@gosh.nhs.uk 02074059200 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.