You may already be aware from the last webinar, or from the most recent newsletter, that the CDKL5 Centre of Excellence would like to create a patient database for patients of CDKL5 Deficiency Disorder in the UK. The purpose of this database is to gather data on incidences of CDKL5 Deficiency Disorder in the UK and therefore enable greater understanding of a complex and rare disease. This will help to inform management guidelines and research into future trials and treatments. #
I have attached two different information sheets and two consent forms to this e-mail. One is for parents or carers of children diagnosed with CDKL5 Deficiency Disorder and one is for parents or carers of adults.
We would be very grateful if you would take time to read the information sheet and give some consideration as to whether you wish to participate. You are under no obligation to participate and if you change your mind at any point, you can withdraw your data from the database with no consequence. You will see from the information sheet that no personal data will be shared outside the research team.
If you are happy to participate, please would you complete and return the appropriate consent form (either participant or consultee depending on whether you are completing on behalf of a child or adult). If you wish to participate, I will send you a link to a short and secure survey in due course where you can answer a list of questions about your child / adult who you care for. The results from the surveys will be stored on a secure server called REDCap and will only be accessed by the research team.
If you have any questions regarding the patient database, please don’t hesitate to get in touch.
CDKL5 Research and Care Coordinator
CDKL5 Centre of Excellence
University Hospitals Bristol and Weston NHS Foundation Trust