Personalised Programmes for Children
Phase 1: Understanding Different Outcomes
BioResource Centre
Parent Information Sheet
1.Invitation to take part
Thank you for your interest in our research study. Please take time to read this information sheet carefully and to discuss it with your family, friends and your family doctor if you wish. Please feel free to ask us if there is anything that is not clear or if you would like more information. If you decide to take part you will be asked to sign a consent form.
As part of the Personalised Programmes for Children project, we are working with the ‘BioResource Centre’ to try and understand how DNA can affect the development or treatment of conduct problems. For this reason, we are asking participating children if they would like to provide saliva samples that will help us investigate this further.
Participation with the BioResource Centre is voluntary, and is not a requirement of participation in the Personalised Programmes for Children project.
2.What is the BioResource Centre?
The BioResource Centre (BRC) is part of a national NHS project to build up a central library of information (or “BioBank)” about people's health.
This BioBankwill be used in scientific/medical research to help better understanding of why different mental illnesses happen and how it might be possible to develop better treatments for them.
The BRC project as a whole aims to collect:
-Biological samples – blood and/or urine, hair, saliva for genetic and biochemical testing.
-Clinical data - Examinations by doctors, family information, responses to treatment etc.
-Neuroimaging data– X-rays and brain scans.
Some of this data will only be kept locally while some information and samples from this resource may also be made available to other scientists working in biomedical and healthcare research that may include the participation of commercial companies.
The BioResource Centre may also invite you to take part in other research studies based on the information they collect. If you are contacted for any follow-up studies, it is up to you to decide whether you would like to participate or not.
For the PersonalisedProgrammes for Children project, we are only collecting saliva, no further biological, clinical, or neuroimaging data will be collected.
3.What does participation involve?
When we visit you at home (or your chosen location) for your first assessment, we will ask your child to provide two saliva samples by spitting into two small containers.
4.What will happen to my child’s saliva sample?
It will be analysed and then stored in a secure laboratory at King’s College London. Access to the anonymised sample may be made available to other scientists under strict and confidential data-sharing agreements.
The BioResource Centrewant to know how genes influence response to psychological treatment. Genes are made out of DNA. They will isolate, analyse and store a sample of your child’s DNA from the donated saliva sample and using advanced laboratory techniques they will determine your child’s genetic makeup. This may include determining the sequence of all or part of your child’s genetic code.
Data will not be passed on to any third parties including your doctor.The stored samples can only be linked to your child by authorised individuals and only when they intend to invite them to participate in follow-up studies.
Your child’s DNA sample will be stored for use in this and future ethically approved research aimed at better understanding the development and treatment of a range of health conditions. The Principal Investigator of the NIHR BRC BioResource, Dr Gerome Breen, will act as custodian of biological samples and associated data.
5.Clinically relevant research findings
You will usually not be given any individual feedback on risk for medical conditions from these analyses. The results are general for research purposes only and not for clinical diagnosis or treatment. If we do find something that is of known effect for which there are implications for treatment we will write to your GP recommending further investigation.
6.Who can we contact if we’re unhappy about our experience or have concerns about any aspect of this study?
If you have a concern about any aspect of this study, please speak to the researchers who will do their best to answer your questions.
Leah Jesnick
Lucy Karwatowska
Lorna French
If they are unable to answer your questions or you have a complaint, please contact their supervisor:
Rob Senior
Medical Director
You are also welcome to seek further advice from the Patient Advice and Liaison Service (PALS:
For more information on the study and researchers involved in this project, visit our website:
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Personalised Programmes for Children (PPC): BioResource Centre Parent Information sheet, Version 1, 15.08.2016
The Personalised Programmes for Children (PPC) project is funded by a National Institute for Health Research (NIHR) Programme Grant for Applied Research (PGfAR)
IRAS Number: 194962