Make a difference and help other families. Your contribution will aid other families and be able to reduce patient risk. Through our registry, we hope to encourage accurate recognition and reporting of SUDEP-related deaths and increase tissue donation to provide researchers with a body of data that will result in a greater understanding of SUDEP. In the long run, we hope to understand its causes and be able to decrease future SUDEPs.
- What is NASR Collecting?
NASR collects both clinical information (seizure types, MRIs, etc.) as well as brain and tissue samples. While we welcome whole-brain donations when available, brain and tissue donation is not necessary to participate. Any and all clinical information is incredibly valuable for our registry.
- How Can I Participate?
To register for our studies, follow the link below. You may also complete this form to be put in touch with grief counselors and participate in advocacy.
If your loved one has died in the past 72 hours and you are interested in tissue donation, please call 855-432-8555 as soon as possible. We are available 24 hours/7 days a week.
- Inclusion Criteria
We are currently enrolling all cases of SUDEP that meet one or more of the following criteria:
- SUDEP within the last five years
- Witnessed SUDEP
- Biospecimens (such as DNA or brain tissue) are available for donation
- A seizure was captured on video EEG
- An Electrocardiogram (ECG or EKG) or sleep study was done
- He/she was diagnosed with either Dravet Syndrome or IDIC15 (DUP15) Syndrome
- In the case that none of these criteria are met, you may still be eligible for this and/or future studies, as well as future advocacy opportunities. We encourage you to fill out the Eligibility Survey above to register. You will be contacted shortly by a member of our study staff.
- What is involved?
Initially there will be a brief telephone screening to verify eligibility. If eligible, we will receive your consent to participate, where you will be given information regarding the study and be able to ask any questions you have. This is a completely voluntary study. You will be able to withdraw from the study at any point. Once consent is given, we will proceed with a telephone interview (45 mins). We will also request a release of medical records from your loved one's medical providers.
- Is My Information Kept Confidential?
Yes, we require written consent in order to obtain any medical records or information. Subject confidentiality will be honored and no data that can be identified with an individual will be released to anyone that isn’t connected to this research without written consent from next of kin. You can download the Consent Form here and Medical Release Form can be downloaded here for your review. The Consent Form contains detailed information on how we intend on keeping your records completely confidential.