Dear CACNA1E-patients and families,

We are very pleased that you have found us!

Has your child or dependent recently been diagnosed with a genetic change in the CACNA1E gene? If epilepsy, intellectual disability, or a movement disorder is present, we would like to warmly invite you to participate in our study on the natural history of CACNA1E encephalopathy, titled "DECADE" (Deciphering the CACNA1E Developmental and Epileptic Encephalopathy).

This condition is still poorly understood, and with our study, we aim to learn more about the natural course of the disease. The study was approved by the ethical committee at the University of Tuebingen in the beginning of 2024 and since then, the study has been running very successfully. We are confident that the ongoing research will provide valuable insights into CACNA1E encephalopathy (CACNA1E-DEE) that will help us better understand the disease in the future and develop potential treatment approaches.

Participation in the study involves annual interviews lasting for 20 to 45 minutes. Ideally, enrollment in the study can be done through the treating physician, but it is also possible to participate through a video interview directly with us.

If you are interested in participating, please send us an email at decade@med.uni-tuebingen.de. We will then coordinate the study enrollment with you.

The patient information can be found underneath.

Thank you once again for your support, and we look forward to hearing from you.

decade@med.uni-tuebingen.de