The International CDKL5 Disorder Database was established in 2012 by researchers from the Telethon Institute for Child Health Research, Perth, Western Australia in conjunction with the International Foundation for CDKL5 Research.
The International CDKL5 disorder database was developed to collect information from families and their clinicians on their child with the CDKL5 disorder at an international level. Using the information collected we will investigate the clinical presentation, management and family impact of the CDKL5 disorder across the world.
The initial family questionnaire was developed to capture information about the period prior to your child`s birth (the pregnancy), your child`s early development, initial seizure onset, current gross motor function and other co-morbidities. There are also questions on the medications which your child uses, their use of therapies and respite and also questions about your family`s quality of life.
The topics covered and questions asked were established through examination of the current literature and in consultation with a consumer reference group made up of families located in Australia, the United Kingdom and the United States of America.
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If you have any difficulties or questions please email us at: firstname.lastname@example.org
All research projects undertaken by the Institute have been submitted to and approved by one or more State ethics committee(s). We obtain consent from study participants to supply us with any personal information.
We use the information we collect to:
a) carry out research projects looking for causes or ways to prevent particular childhood conditions
b) perform medical research and statistical analyses into the general health of populations to inform health providers and assist in government policy planning.
When we receive completed questionnaires or other information from you, we remove any identifying data such as your name, address and telephone number.
Identifying material is kept separately from your data. Both are stored in electronic and paper forms. Electronic data are kept on a secure network and protected by passwords to which only members of the CDKL5 disorder study team have access. Paper questionnaires are stored in locked cabinets in locked rooms in which the CDKL5 disorder study members work.
Your information is shared between clinicians and researchers working on the project and to which you have consented. At any time you can request to review any information that you have given to us.