REN Survey

 

ver esta encuesta en español

We are interested in gathering information about people that have a history of seizures (current or in the past) AND are living with one or more of the following rare conditions:

Aicardi Syndrome
Dravet Syndrome
Hypothalamic Hamartoma
Infantile Spasms or West Syndrome
Lennox-Gaustaut Syndrome
Phelan-McDermid
Rasmussen’s Encephalopathy
Tuberous Sclerosis
Dup15Q Syndrome

In this short survey, we will refer to the person with one of the seizure-related conditions above as “the person” or the “person with a history of seizures”.

1. What is your relationship to the person with a history of seizures (choose one)?
2. What is the diagnosis of the person with a history of seizures (choose all that apply)?
3. Approximately how many seizures has the person had in their lifetime?
4. What is the current age of the person with a history of seizures?
5. What is the gender of the person with a history of seizures?
6. What is the race/ethnicity of the person with a history of seizures (check all that apply)?
7. In what State does the person with a history of seizures live?
8. Would you (the person completing this survey) be willing to consider participation in future research studies that involve completion of online surveys?
9. Would you (the person completing this survey) be willing to consider participation in future research studies that involve sending or submitting medical records (electronic or paper copies)?
10. Would you be willing to consider allowing the person with a history of seizures to provide a blood sample for a future research study looking at the genetics of seizure disorders or a specific syndrome?
11. Would you be willing to consider allowing the person with a history of seizures to provide a saliva sample for a future research study looking at the genetics of seizure disorders or a specific syndrome?
12. Would you be willing to consider allowing excess tissue removed during a surgical procedure to be used for research of seizure disorders or a specific syndrome?
13. Would you be interested in serving on the Rare Epilepsy Network Registry Steering Committee or other committee should the Epilepsy Foundation be successful in winning the PCORI grant? PCORI is most interested in patient/family involvement in establishing the research priorities.
14. The patient advocacy Foundation/Organization for your specific syndrome/disorder would like to be able to contact you in the future about providing more information to this Registry. Please provide the following information about yourself (the person completing this survey):
15. Please check which patient advocacy organization(s) you belong to or that we can send your contact information to as part of this survey (check all that apply).
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