International CDKL5 Clinical Research Network

Launched by UNIVERSITY OF COLORADO, DENVER · Sep 23, 2022

Keywords

ClinConnect Summary

The International CDKL5 Clinical Research Network is a study focused on understanding CDKL5 deficiency disorder (CDD), a serious condition caused by changes in the CDKL5 gene. This disorder leads to challenges in development, severe seizures, and difficulties with movement and vision. The goal of this trial is to identify effective ways to measure the impact of new treatments and to find specific biological markers that can help track progress in patients. By doing this, researchers hope to improve future therapies for CDD and other similar disorders.

The study is currently looking for participants, including children and young adults aged 1 month to 100 years who have been diagnosed with CDD and are receiving care at participating medical centers or are registered in the International CDKL5 Disorder Database. If eligible, participants can expect to be part of a comprehensive assessment that will help scientists better understand the condition. This research is important because it aims to create reliable ways to evaluate new treatments, ensuring that any future therapies can be tested properly. If you or someone you know might fit the eligibility criteria, this could be a meaningful opportunity to contribute to advancing care for CDD.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • All children diagnosed with CDD age 1-month to 100 years of age that are receiving care at one of the study institutions or are registered with the International CDKL5 Disorder Database will be considered for the study population.
• Exclusion Criteria:
• • Individuals who do not meet study inclusion criteria.