How to Participate
PLEASE NOTE: the survey for work stream 1 and the focus groups for workstream 3a have now closed.
There are several opportunities for parents and healthcare professionals to participate in the CSOR programme, and these are outlined below.
| Purpose | How | When | More information |
|---|---|---|---|
| To understand what a 'successful' treatment is for a child with a surgical condition | An online survey. May take about 20 minutes of your time |
Survey is now closed. | Workstream 1 |
| To find out how to ask parents if their child's information can be used in CSOR | Discussions in small groups or on your own with researchers by telephone, video call or in person. May take 30 – 60 minutes of your time | Focus groups are now closed. | Workstream 3a |
| To work out how to collect information from parents about their child's health | Testing and discussing different ways of collecting information (e.g. apps, computer, paper) in small groups or on your own. May take 30 – 90 minutes of your time | This part of the project is currently being set up. Register your interest if you would like us to let you know when it is open. | Workstream 3b |
To register your interest, or for help with any questions about participating in the CSOR study please contact the team by email at csor@npeu.ox.ac.uk, or call 01865 617771.
Join our Parental Advisory Group and mailing list
Parents, carers and representatives of support groups and charities for children with surgical conditions, are invited to join our Parental Advisory Group. The group meet for a day once yearly where you will be updated on the work of the NPEU in childhood conditions, as well as discuss new research ideas and advise on many aspects of research underway.
If you would like to join the Parental Advisory Group and mailing list for updates on this project, as well as news about opportunities to be involved with other projects in child and maternal health, please contact the team at csor@npeu.ox.ac.uk
What will happen with my information?
All information you provide will be kept securely at the University of Oxford. Your identifiable information will only be used for the purposes stated and will not be shared with anyone else.
Further information for CSOR project participants
The results of the project will be published in scientific journals and reports. It will not be possible to identify you from any publications or reports resulting from this project. The information you provide may be shared with other researchers for the purposes of related research. It will not be possible to identify you from the data we share.
Who do I contact if I have a concern or complaint?
If you have a concern about any aspect of this study, please contact Hatty Goddard, CSOR Programme Manager, at csor@npeu.ox.ac.uk; or call 01865 617771.
For further information about how the NPEU handles your data and your rights please read the NPEU privacy notice: https://www.npeu.ox.ac.uk/privacy-notice
