CDKL5 Disorder International Registry Database
CDKL5 Database Newsletter, July 2013
News from the CDKL5 International Database November 2013 (summarized by Dr. Katheryn Elibri Frame, DO & President of the IFCR)
The International CDKL5 Disorder Database was established in 2012 as a collaborative effort between researchers located in Australia and the International Foundation for CDKL5 Research. The database aims to collect information from families on their child’s clinical presentation, including developmental history, seizure presentation, gross motor function, communication abilities as well as other medical problems and their management, including seizure control and use of therapies; and effects of having a child with CDKL5 on the family.
How do we collect information and what is done with it?
- You will be provided with an information sheet and consent form for the study.
- You will also be provided with a login and password to complete the questionnaire online, or we can send you a paper version in the mail.
- Your information, which will be de-identified (removal of names etc), will be entered into our secure database which is password protected and only the CDKL5 disorder study investigators have access.
- The information which you provide will contribute to the development of our understanding of the natural history and clinical management of children and adults with the CDKL5 disorder.
- Summary data will be made available online for access by families and clinicians.
If you are a family or care worker caring for a child with a mutation in the CDKL5 gene you are invited to participate in this database.
If you would like to participate in the database, please click here to register.
If you already have a login and would like to login to the database, please click here.
Future research directions
This database will be useful for many research purposes. We intend to collect longitudinal data to allow an understanding of how children with the CDKL5 disorder progress as they grow older. A questionnaire for clinicians is also planned to collect additional medical information on children with the CDKL5 disorder. This database will be a unique international data source of information for research on the CDKL5 disorder.