The International CDKL5 Database is a joint effort between the International Foundation for CDKL5 Research and scientists in Australia, led by the research team of Stephanie Fehr, Dr. Helen Leonard and Dr. Jenny Downs. This database is a critical component to our research efforts and was launched in 2012. Today, the research team has issued it’s first newsletter highlighting many of the important preliminary findings that will help us better understand the clinical spectrum of CDKL5.
Please click here to read the July 2013 CDKL5 Database Newsletter.
IFCR wishes to thank Stephanie Fehr, Dr. Helen Leonard and Dr. Jenny Downs for their exhaustive efforts to make this database relevant and comprehensive. We’d also like to express our gratitude and appreciation to all those families who have taken the time to participate in this database. You are making a huge difference in the lives of those affected by CDKL5! If you have not yet taken part in this study, please consider doing so, as everyone’s input is necessary to truly gain a better understanding of this disorder, which will help direct us in our future research efforts.