INTERNATIONAL CDKL5 DISORDER DATABASE (ICDD) AND CDKL5 DEFICIENCY DISORDER INTERNATIONAL PATIENT REGISTRY AT ODC ANNOUNCE DATA COLLECTION COLLABORATION

We are pleased to announce to the CDKL5 Deficiency Disorder (CDD) community that the International CDKL5 Disorder Database (ICDD), founded and directed by Dr. Helen Leonard and Dr. Jenny Downs in partnership with the International Foundation for CDKL5 Research (IFCR), and the CDKL5 Deficiency Disorder International Patient Registry, based at the University of Pennsylvania’s Orphan Disease Center (ODC), have outlined an agreement that will allow the two groups to collaborate on complementary projects collecting information from CDD patients.

EXCITING NEWS! YOUR RESEARCH DOLLARS AT WORK!

The National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) has awarded a five-year R01 research grant, entitled “Pathogenic Studies of CDKL5 Disorder,” to Dr. Zhaolan (Joe) Zhou, Principal Investigator (PI), at the University of Pennsylvania Perelman School of Medicine, and Dr. Douglas Coulter, co-PI, at the University of Pennsylvania Perelman School of Medicine and Children’s Hospital of Philadelphia.

The International Foundation for CDKL5 Research announces new president

June is CDKL5 Awareness Month and June 17th is CDKL5 Worldwide Awareness Day

Natural History Sites Now Enrolling!

Jan. 1, 2017 – Dec. 31, 2019

Knowledge that will be found  in this natural history study is essential for developing more efficient clinical trial designs. Check out the 15 enrolling sites and find one close to you!