What You Need To Do
Information and Consent
First, we ask that all participants sign a Patient Sign-off Form that gives the study team permission to contact you and discuss the study with you to determine if you qualify for participation. This form protects your privacy. We will also ask you to sign a Medical Release Form to obtain your permission to read your medical records to further help us determine if you fit the criteria for the study.
Next, after discussing the study with you and determining if your symptoms meet the study criteria, we’ll ask you to sign an Informed consent and form or, if you are under 18 years of age, an Informed assent form. Parents are asked to sign the informed assent for their children. These forms tell you more about the study and our legal obligations to you as a participant. With your permission, we will ask you if the rest of your family members also would like to participate and if we may contact them. If they would like to participate, we ask that they, too, sign an informed consent/assent form.
Conducting an Interview
Interview
We ask all participants to conduct a short telephone interview with one of our trained researchers. The telephone interviews enable us to gather a detailed clinical picture of each participant’s seizure history – such as the frequency and types of seizures, when seizures occur, factors that may start a seizure, etc., both according to each study participant (family members included if they have agreed to participate). Other people who have witnessed seizures of the candidate are also welcome to participate in the interview process if they are willing. and submit a small sample of saliva in a special container that we provide.
Saliva Sample
We ask all participants to submit a small sample of saliva in a special container that we provide (we pay for all shipping materials). We use saliva samples to extract DNA (the molecules that contain the genes) and analyze it to look for clues about the genes for Idiopathic Generalized Epilepsy[link to Idiopathic Generalized Epilepsy].
Privacy
No personally identifiable information will be collected or stored with your saliva sample.