Natural History Study ‘DECADE’: Deciphering CACNA1E-related DEE

Dear CACNA1E-patients and caregivers,

 

we are happy to announce that we are finally able to enroll participants in to our natural history trial.

As you know our current knowledge about CACNA1E related disorders is limited.

 

Have you or your child been diagnosed with a genetic variant in the CACNA1E gene and do you or your child suffer from epilepsy, mental retardation or a movement disorder?

If yes, we invite you to join our study on the natural history of the CACNA1E encephalopathy „DECADE: Deciphering the CACNA1E developmental and epileptic encephalopathy“.

We are trying to gain a better understanding of the disease by yearly interviews between patients/caregivers and the treating physicians.

 

A study inclusion is possible through your treating physician or through our department by an online video-interview.

 

If you are interested in participating in the study we invite to leaves us a message at decade@med.uni-tuebingen.de .
We will coordinate the study entry together.


Download
Patienteninformation DEUTSCH (German)
Patienteninformation DECADE_deutsch_V1.1
Adobe Acrobat Document 241.4 KB
Download
Participant information ENGLISH
Participant informationDECADE_english_V1
Adobe Acrobat Document 200.7 KB

Download
DATENSCHUTZVEREINBARUNG (DEUTSCH/GERMAN)
(UKT DSB 230502) Datenschutzvereinbarung
Adobe Acrobat Document 220.9 KB
Download
DATA SAFETY INFORMATION (ENGLISH)
Data safety information DECADE_english.p
Adobe Acrobat Document 184.9 KB

Cacna1e international supported the natural history study with €20,000.




decade@med.uni-tuebingen.de