Research Findings
Find out more about research findings in Dravet Syndrome.
Families living with Dravet Syndrome hold unique, expert knowledge gained through daily experience of complex care needs, navigating health systems, managing risk, and supporting quality of life. Dravet Syndrome UK recognises the valuable role of Patient and Public Involvement and Engagement (PPIE) in research and is committed to supporting research that serves the needs of our community.
To streamline this, we have established a Lived Experience Board of families living with Dravet Syndrome who are interested in contributing to PPIE. Members are parents, primary carers, siblings, and grandparents of people living with Dravet Syndrome, drawn from across all UK regions and backgrounds.
To further support researchers in working effectively with our community, we have developed a PPIE Guide outlining best practice for PPIE with people living with Dravet Syndrome and how to access input from our Lived Experience Board.
PPIE Guide
- Complete the enquiry form. We will assess this based on community benefit and board capacity.
- If your request is approved, DSUK will share your project details with board members in our monthly opportunity email. The email will include information about your project, what’s involved, time commitment, and reimbursement details. Board members self-select the opportunities they wish to pursue
- DSUK will collate the details of interested board members and provide you with contact details for a representative group.
- You contact board members directly about the project. For individual activities (such as reviewing documents), you coordinate directly with board members. For group activities (such as workshops), DSUK will join the session to ensure a safe, structured, and accessible environment, whilst you provide the content expertise and manage the session agenda.
- Please share a short summary to DSUK about the activity and its impact.
DSUK staff members and trustees have years of experience consulting on research studies and clinical trials. We also have people with lived experience on our team, giving us unique perspectives. At the early stages of your project, DSUK can provide strategic advice on working with the Dravet Syndrome community, review patient-facing materials, and share priorities. This helps you shape your approach and understand the landscape before detailed design work begins.
If you are unsure on whether to request consultation from DSUK or our Lived Experience Board, please contact us and we will be happy to advise you on which would be most appropriate.
If you’re seeking to recruit participants for your study or trial (as opposed to PPIE input), DSUK has a separate process for advertising research opportunities to our community; contact [email protected] to discuss participation requests.
PPIE Guide
You can view Dravet Syndrome UK's Patient and Public Involvement and Engagement (PPIE) guide here.
Lived Experience Board Request
To request Patient and Public Involvement and Engagement (PPIE) with our Lived Experience board, please fill out this form.
Current Research
Discover current developments in Dravet Syndrome research.