Affiliated Core and Institutes

LIke ThisLIke ThisLIke ThisLIke ThisLIke This

 

Repository Core

The Repository Core for Neurological Disorders (“the Repository Core”) is a database of medical information and biological samples, such as a blood or saliva sample.

We are collecting the information and samples from children and their families for scientists who will study these disorders in the future. The goal of the research is to increase our understanding of neurological conditions, specifically their causes and treatments.

Contact Us

Research Study Coordinator
Marti Goldenberg
Tel: 617-919-2773
Marti.Goldenberg@childrens.harvard.edu

Program Manager
Kira Dies, ScM, CGC
Tel: 617-919-3009
Kira.Dies@childrens.harvard.edu

Principal Investigator
Elizabeth C. Engle, MD
Tel: 617-919-4030
Elizabeth.Engle@childrens.harvard.edu

 

Frequently Asked Questions (FAQs): Participation

show_more_start

Who is eligible to participate?

Any child or teen with a neurological disorder seen at Boston Children’s Hospital and his or her family members can enroll in the Repository Core.

What does participation involve?

Participating in the Repository Core involves a one-time visit, which can either be included in one of your child’s regular visits to Boston Children’s or can also be done at another time that is convenient for you.

If you participate in the Repository Core, the process is as follows:

  1. Your informed consent is obtained. Informed consent is a legal term. It means that you are fully aware of the facts and risks of participating in the Repository Core before agreeing to it.
  2. The research team asks you a few questions regarding your or your child’s medical history. We also obtain other medical information from your or your child’s medical record and doctors. In the future, we may ask to take pictures and/or video recordings of your or your child (this is optional).
  3. Your saliva or a blood sample is collected. The research team may also ask to see tissue or other samples collected by your or your child’s doctor from prior or future procedures.
  4. All of the information and samples that we collect are coded with ID numbers instead of your or your child’s name. The information and samples are stored in a secure database and freezers for studies of neurological disorders.

How long will participation take? Does it cost anything to participate?

This process takes roughly an hour of your time. There is no fee to take part in the Repository Core, and there will be no payment for your participation.

Can I see the results?

When these samples are used in the future, research on them will be done in a laboratory. This means that we cannot directly release results to you. However, you can call or email the Repository Core at any time to ask questions or to check in on the overall progress of the program.

We can also contact you if clinically important information and/or genetic testing become available.

Will my participation be confidential?

To protect you and your child, all information and samples gathered are accessible only by Repository Core staff and approved researchers.  Everything stored in the Core is confidential and is not placed in the medical record of participating children or their families

show_more_end

Related Documents

show_more_start

Family Education Sheet

Physician Reminder Sheet

show_more_end

Conditions of Interest:

show_more_start

  • Tuberous Sclerosis Complex
  • Sturge-Weber Syndrome
  • MoyaMoya Syndrome
  • Agenesis of the Corpus Callosum
  • Hypoxic Ischemic Encephalopathy
  • Hydrocephalus
  • Inferior Vermian Hypoplasia
  • Septooptic Dysplagia
  • Stroke
  • Rett Syndrome
  • Rasmussen’s Encephalitis
  • Epilepsy
  • Infantile Spasms
  • Opsoclonus-myoclonus-ataxia Syndrome
  • Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD syndrome)
  • Focus on children/families with unstudied neurological conditions or disorders as well!

show_more_end

Associated Departments and Programs

show_more_start

  • EpGap Project – Dr. Ann Poduri, Catherine Shain
  • Epilepsy of Genetics Program – Dr. Ann Poduri’s Lab
  • Tuberous Sclerosis Alliance –  Dr. Mustafa Sahin’s Lab
  • Mutation Negative Rett Project – Dr. Ann Poduri/Dr. Heather Olson
  • Sturge-Weber Syndrome and Moya-moya Syndrome Projects – Dr.  Mustafa Sahin
  • Epilepsy Department at BCH
  • Inpatient Floors – Neurology ICU service, 9 North
  • Agenesis of the Corpus Callosum Project – Dr. Chris Walsh’s Lab

show_more_end

Associated Physicians/Referring Physicians

show_more_start

Dr. Mustafa Sahin

Dr. Ann Poduri

Dr. Elizabeth Engle - Principal Investigator

Dr. Mark Gorman

Dr. Michael Rivkin

Dr. Janet Soul

Kira Dies, ScM, CGC

show_more_end

 
Request an Appointment

If this is a medical emergency, please dial 9-1-1. This form should not be used in an emergency.

Patient Information
Date of Birth:
Contact Information
Appointment Details
Send RequestIf you do not see the specialty you are looking for, please call us at: 617-355-6000.International visitors should call International Health Services at +1-617-355-5209.
Please complete all required fieldsThis department is currently not accepting appointment requests onlineThis department is currently not accepting appointment requests online

Thank you.

Your request has been successfully submitted

You will be contacted within 1 business day.

If you have questions or would like more information, please call:

617-355-6000 +1-617-355-6000
close
Find a Doctor
Search by Clinician's Last Name or Specialty:
Select by Location:
Search by First Letter of Clinician's Last Name: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
More optionsSearch
Condition & Treatments
Search for a Condition or Treatment:
Show Items Starting With: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
View allSearch
Visitor Information
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
Close