Become a CDKL5 Research Champion
Are you a parent, carer or family member of a child or adult with CDKL5?
Join our NEW network of CDKL5 Research Champions, help shape CDKL5 research in the UK, and improve outcomes for people affected by CDKL5.
Involving patients and their families in the design of research projects is called Patient and Public Involvement (PPI). This is where people with lived experience of CDKL5 work alongside researchers and doctors, using their voice and their day-to-day, personal experiences and knowledge of CDKL5, to co-create research projects.
If someone with lived experience of CDKL5 is involved in the design of a CDKL5 research project, it means the project and it’s outcomes are of MORE benefit to the CDKL5 community.
If you have experience of CDKL5 – if you have a diagnosis of CDKL5, or if you live with or care for a person with CDKL5 – this makes YOU an expert, and we need your help!
At CDKL5 UK we are passionate about connecting people with lived experience of CDKL5 with researchers and doctors. We are here to support you every step of the way, so that you feel confident to share your lived experiences of CDKL5 to work with and help professionals.
If you are a researcher looking to involve people with lived experience of CDD in your research project, click here.
What is PPI, and why is it so important?
Patient and Public Involvement (PPI) ensures that people affected by CDKL5 are at the heart of CDKL5 research, influencing the design and direction of CDKL5 research in the UK. There is growing evidence to suggest that PPI improves the outcomes and results of research.
Rather than research being undertaken ‘for’ or ‘about’ the CDKL5 community, research is undertaken ‘with’ or ‘by’ the CDKL5 community.
PPI in research is now seen by many funders as an essential part of the process of how research is identified, prioritised, designed, conducted and disseminated. This ensures that research is focused on the day-to-day needs of people affected by CDKL5.
Many funders will now accept applications ONLY if they clearly show how the researcher has and will continue to involve the patient community at every stage of their research.
Patient and public involvement is not just a ‘tick-box exercise’.
What PPI is NOT!
PPI and being a CDKL5 Research Champion does not mean you will take part in clinical trials. You will be working alongside researchers to design and direct their project, you will not be a participant in their project.
What are the benefits of getting involved?
Being involved in CDKL5 research means:
- Research results and outcomes are more relevant and have more impact on the day-to-day lives of people living with CDKL5 and their families
- You will have the opportunity to help others who are affected by CDKL5 and on a similar journey to you
- You will be helping to raise awareness of CDKL5 and it’s effects on individuals and families within the research community
- You will be able to direct research into areas you feel are most important to you and your family
What are the benefits to researchers?
Working with CDKL5 UK and the CDKL5 Research Champions, means:
- You will have access to a diverse group of people affected by CDKL5
- Your research will be focused on the needs of people affected by CDKl5
- Your research will have improved patient experience, and trial recruitment and retention
- You will create stronger funding applications
Get in touch with Beth (CDKL5 UK’s Development and Engagement Champion) at bethan.vaughan@curecdkl5.org.uk to discuss how you can involve people with lived experience of CDKL5 in your research project.
How often can I get involved?
You can get involved as little or as often as you’d like, depending on availability of projects. When you sign up, Beth (Development and Engagement Champion) will contact you to give you some more information about being a CDKL5 Research Champion, and find out some more information about you to tailor research opportunities to you.
You will then be contacted whenever an opportunity arises. If it sounds like something you would like to be involved with, you can let Beth know, but if it’s not for you, or if you don’t have the time to do it, you can just say no. This will not affect your ability to take part in the future.
What sort of opportunities can I get involved with?
Projects vary, but some examples include:
- Sharing your personal experiences and knowledge of CDKL5
- Reviewing Plain English (Lay) summaries for project funding applications before they are submitted to funders, or for presentations at events and conferences
- Using your voice to give your opinions and share your personal experiences of CDKL5 during focus group meetings or during online webinars with researchers or doctors
- Suggesting ideas for new research projects, and identifying important questions for researchers to address
Who can sign up to be a CDKL5 Research Champion?
Anyone who is affected by CDKL5, either directly or in-directly, can sign up to this network and get involved, including:
- People who have a diagnosis of CDKL5
- Parents
- Carers
- Siblings
- Other family members such as grandparents
What happens when I sign up?
You can sign up to become a CDKL5 Research Champion using the form at the end of this page. We ask for basic details, like your name, email and phone number, and how you would like us to contact you in the future.
Once you have signed up, you will receive a confirmation email. You will then receive another email from Beth within 3-5 working days, which will contain some more information about being a CDKL5 Research Champion.
It is important that we can tailor research involvement opportunities to you, and the type of experience you have with CDKL5 – for example, if you are a parent you will have different experiences than that of a sibling. Beth will ask you to complete a short form which will capture some more in-depth information about you (so that we can tailor each opportunity to each member of the network).
You can read more about how we use your data, and how we store it, in our Data Protection Policy here, and you can find more information about being a volunteer in our Volunteer Policy, here.