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. This initiative will make more efficient use of family contributions to research.

Under this agreement, the ODC Registry will collect data from patient families/caregivers enrolled in the ODC Registry, including collecting data over several different times, as well as notify families of opportunities to participate in clinical trials. Families who enroll in the ODC Registry can choose to share their ODC data with Dr Leonard’s ICDD study, allowing their patient’s information to be aligned. In this way, newly collected data on CDD can extend and enrich the existing dataset of more than six years. This will help provide innovative research and analysis of this disorder; to date, this effort has led to more than ten publications, including landmark papers establishing CDD as a distinct clinical entity. More importantly, this research has helped inform the clinical trials currently ongoing for CDD, including the Marigold study of Marinus Therapeutics.

Both Registry studies will continue to work together to collect the most relevant data, with the minimal burden on families and caregivers, to ensure the highest quality and greatest service to the community. For more information on the ICDD, please go to https://www.cdkl5.com/cdkl5-international-registry-database/

For more information on the ODC Registry and its platform developed by Pulse Infoframe, please go to http://orphandiseasecenter.med.upenn.edu/cdkl5-deficiency-disorder-registry and https://www.pulseinfoframe.com/penn-orphan-disease-center-to-develop-rare-disease-patient-registries/