Information for Enrolled SUDCRRC Subjects

Study Participation includes completing the following:

Consent Forms:

These will be completed by phone or in person with SUDCRRC. Once signed by you, you will return those hard copies to the SUDCRRC address on right. The SUDCRRC representative who obtained your consent, will sign those originals and email you a completed version in pdf by email.

Mail to Address:

Laura Gould
NYU Comprehensive Epilepsy Center
223 East 34th St, Ground Floor
New York, NY 10016

Study Interview:

This can be scheduled with [email protected]  with the goal of completion within one month of study enrollment. Please allow an hour for this phone call.

Links to Interview will be emailed prior to call.

Collecting Medical Records:

The SUDCRRC will need all of your child’s medical records. These include: prenatal records, hospital birth records, pediatric records, ER and hospitalizations records, specialists records and any medical tests they had performed during their life.

This can be time consuming and the review process cannot begin until all records have been obtained. Complete the MD list and email it to [email protected] . The Medical Record release form can be used to assist you in communicating with your providers. If you need assistance, please inform SUDCRRC.

Mail, Fax or Email Records to:

Laura Gould
NYU Comprehensive Epilepsy Center
223 East 34th St, Ground Floor
New York, NY 10016
Fax: 646-754-9892
Email: [email protected] 

Biological parent and relative blood sample donation:

SUDCRRC will send you a blood shipper kit after your enrollment. You can take this to your doctor for your blood draw, visit NYU for the blood draw or have the SUDCRRC schedule an in home appointment for you through a company we have contracted called EMSI. if you choose EMSI, they will contact you by phone and set up an appointment that is convenient for you.

Blood draws should only occur on Mon-Wed of non-holiday week. Email [email protected]  in advance to communicate blood draw date.

Medical Examiner/ Coroner records and specimens:

SUDCRRC will work with them directly to obtain their investigative report and any specimens needed for the study. Complete the bottom portion of the MR release form to right and email to [email protected] .

Your child’s specimen for genetic analysis:

SUDCRRC will obtain this from the  Medical Examiner or Coroner, or other source based on discussions with you. If you have banked DNA from your child then we would ask you to complete a “withdraw” form in order for that sample to be sent to the SUDCRRC. If you are interested in DNA banking but have not done so, please see this webpage for more information.

Use the below information to complete:
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NYU Center For Biospecimen Research and Development (CBRD)
Medical Science Building
550 First Ave, #381
New York, NY 10016
Phone: 646-501-4268
Fax: 646-754-9658
Contact: Laura Gould at [email protected] 
or 917-273-2733
Payment: Via NYU

Genetic testing and analysis information

Have questions? Please contact Laura Gould, Research Scientist by phone at 646-754-2230 or by email.

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