Ask to take part

Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.

Contact Information:

Ms Mai Baquedano
-
pearl-study@bristol.ac.uk


Mr Stuart Mires
+44 117 342 5470
stuart.mires@bristol.ac.uk


Dr Emma Griffiths
-
Emma.Griffiths@uhbw.nhs.uk


Miss Clare Skerritt
+44 1173428839
clare.skerritt@uhbw.nhs.uk


Study Location:

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Be Part of Research - Trial Details - UK cohort study of congenital anomalies potentially requiring surgery in children (Surgical-PEARL study)
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UK cohort study of congenital anomalies potentially requiring surgery in children (Surgical-PEARL study)

Recruiting

Open to: All Genders

Age: Child

Bristol

Medical Conditions

Congenital anomalies potentially requiring surgical intervention

This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.


Around 1 in 60 babies are born with congenital anomalies (a structural condition) that require surgery to survive but we don’t really know why congenital anomalies occur. We are setting up a study to collect information about the health and quality of life of children with congenital anomalies that may require surgery. We are asking parents whose unborn baby or child has been diagnosed with a structural condition to take part in this study. We hope to look at risk factors by collecting samples from children and their parents. By monitoring children’s blood, urine and stool during their care in the hospital we may be able to work out better treatments for them.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

19 May 2022 01 Jan 2032

Publications

2022 Protocol article in https://pubmed.ncbi.nlm.nih.gov/36600324/ (added 06/01/2023)

Participants can be approached before or after birth. Once the congenital anomaly has been diagnosed, the parents will be approached by the study team and given a participant information leaflet. If the parents consent to their child taking part in the study, details about their delivery and surgery will be collected by the research team. If the parents also consent to samples, these will be collected after delivery (placenta, umbilical cord blood), where applicable, and during their surgical admission (blood, urine, stool and waste tissue). Parents will also be asked to complete a questionnaire 12, 24, 36 and 48 months after delivery. Questionnaires will be completed online and include questions about risk factors, their quality of life and if they have been admitted to the hospital or seen a GP since their surgery.
Biological parents will also be approached and given a participant information leaflet. If they are happy to take part in the study, data on potential risk factors will be collected from medical notes and/or questionnaires, and blood and urine samples will be collected.


Children ages 0-5 years old, diagnosed with a congenital anomaly that might require surgery to correct.
The study will also invite the biological parents to collect data and samples.

You can take part if:



You may not be able to take part if:


1. Unable to give informed consent and/or assent2. Main residence is outside the UK


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

  • University Hospitals Bristol and Weston NHS Foundation Trust
    Trust Headquarters Marlborough Street
    Bristol
    BS1 3NU

There are no direct benefits of participating in the study, but we hope that the results from this study may benefit future care and outcomes for patients and the NHS. Samples will be taken from the children from lines that are already in place, so no extra needles will be needed.
There is very minimal risk associated with taking blood samples from the biological parents.

Ms Mai Baquedano
-
pearl-study@bristol.ac.uk


Dr Emma Griffiths
-
Emma.Griffiths@uhbw.nhs.uk


Mr Stuart Mires
+44 117 342 5470
stuart.mires@bristol.ac.uk


Miss Clare Skerritt
+44 1173428839
clare.skerritt@uhbw.nhs.uk



The study is sponsored by University of Bristol and funded by Oyster Foundation Charity; British Heart Foundation; NIHR Bristol Biomedical Research Centre.



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Read full details for Trial ID: ISRCTN12557586

Or CPMS 51673

Last updated 19 March 2025

This page is to help you find out about a research study and if you may be able to take part

You can print or share the study information with your GP/healthcare provider or contact the research team directly.   

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