LGS/Dravet syndrome database questionnaire (South Asia)

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Lennox-Gastaut syndrome (LGS) is a rare epilepsy syndrome associated with severe seizures in childhood. The syndrome usually begins during infancy or early childhood and is characterized by uncontrollable movements of the body. Those with LGS often have a resistance to anti-seizure medications, leading to limited availability of treatment options.

Dravet syndrome (DS) is a rare epilepsy syndrome most commonly caused by a genetic mutation. The syndrome usually begins during infancy or early childhood and is characterized by prolonged focal seizures that can evolve into other seizure types. Those with DS often have a resistance to anti-seizure medications, leading to limited availability of treatment options.

This form is for data collection purposes only, to be used to encourage clinical trials to come to the South Asian countries. This information will remain private, and never shared without prior consent. Only patient de-identified information will be shared with pharmaceutical companies to understand patient demographics. Participation in this database is important as it will help get pharmaceutical companies sooner. Participation in this questionnaire is voluntary.

For any questions, please reach out to:

support@cdkl5southasia.com.

*What is your relationship to the person for whom you are completing this database questionnaire? *

Self

Parent

Caregiver

Legal guardian

Relative

Friend

Other:

Date of birth of the child/patient
*

YYYY

Gender of the child/patient
*

Female

Male

Primary residence (nearest metro city) of the child/patient
*

Does the potential study participant have diagnosis? *

Lennox-Gastaut syndrome

Dravet syndrome

CDKL5 disorder

Other; add details of the diagnosis below

Details of the diagnosis/gene mutation (from above question)

Is the patient using 0-3 anti-seizure medicines (ASMs) to manage symptoms for his/her seizures and still experiencing seizures?

Yes

Clear selection

Name of the neurologist

Name of the hospital where patient is seen regularly

Email address of parent/caregiver
*

Cell phone number of parent/caregiver
*

Would you like to participate in clinical trials as and when they become available? (Example, Soticletstat by Takeda Pharmaceutical)
*

Yes

Maybe

Submit

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