Parent and Carer Research Forum
In February 2018 Alder Hey Clinical Research Facility (CRF) set up a Parent and Carer Research Forum.
One of the main aims for the Forum is to support the design and delivery of clinical trials involving children and adolescents suffering with chronic and long-term conditions. Parents and carers were invited to be part of a forum to support a variety of studies being undertaken within Alder Hey CRF and across UK and Europe.
Role of the Forum
The Forum will work alongside researchers to improve resources and play an integral role in the development of a wide range of paediatric studies. The roles will include:
- Comment on research studies giving comments and advice from a parent/carer perspective
- Provide input into focus groups when required
- Design patient information sheets to be used by families
- Comment on data analysis and assist with the dissemination of the research project findings to relevant stakeholders including parents, young people, and clinicians
- Members may be asked to attend other meetings as co-applicants with researchers to assist specific studies
- Members may be asked to attend conferences, workshops and other events to promote the work of the group
- Members may be involved with social media groups to support and promote the work of the group.
- Members of the forum will receive relevant training to support them in their role.
For further information about the Forum read the Terms of Reference. If you are a parent or carer of a child with long-term chronic conditions and would like to join the forum either face to face or virtually (through its closed Facebook page) complete the expression of interest form.