CDKL5 International Registry & Database

Registration & Login


What is The CDKL5 International Database?

The CDKL5 International Database is a vitally important research tool in which all families (worldwide) affected by CDKL5 are encouraged to participate. IFCR has partnered with researchers Stephanie Fehr, Helen Leonard and Jenny Downs at the Telethon Institute for Child Health Research (Australia) in the development of the database because we recognize its importance in research, treatments, interventions and clinical trials.


History:

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.

Participation

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.


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.


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