Brain Donation Program
To advance our understanding of the cause, course, and treatment of narcolepsy, in 2001 Stanford University started a program to obtain human brain tissue for use in narcolepsy research. Donated brains provide an invaluable resource and we have already used previously donated brains to demonstrate that narcolepsy is caused by a lack of a very specific type of cell in the brain, the hypocretin (orexin) neuron (read the article). While the brain donations do not directly help the donor, they provide an invaluable resource and a gift to others. The real answers as to what causes or occurrs in the brain when one has narcolepsy will only be definitively understood through the study of brain tissue. Through these precious donations, narcolepsy may eventually be prevented or reversible.
To help you in your decision, we have answered some questions that are frequently asked. If you have any questions or want to speak with someone about the process, please contact our clinical coordinator, Mali Einen. If you want to find out more detailed information about what is done during the autopsy, what is done with the tissue, and some of our publications that have been made possible by previous brain donations, please click here.
- Who can enroll? answer
- What is the enrollment procedure? answer
- When should enrollment take place? answer
- Who organizes autopsy services once enrollment takes place? answer
- Will brain donation disfigure the body? answer
- What does it cost? answer
- If I don't complete the paperwork, can my family still authorize the donation? answer
- Can I change my mind? answer
- Can I donate my tissue for narcolepsy research and still donate my organs for transplantation? answer
- Can I register for the Brain Donation Program online? answer
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Who can enroll?
We currently are seeking brains from people with narcolepsy (with cataplexy and without), idiopathic hypersomnia and controls or people without a diagnosed sleep disorder of excessive sleepiness. Control brains are quite important to research, as findings must always be compared to tissue of a non-affected person. Friends and loved ones of people who suffer with narcoleps may wish to donate to our program to help fill this very important need. - What is the enrollment procedure?
Once you have requested a brain donation packet one will be sent to you in the mail or you can download them from our site. The packet consists of several forms that we ask you to complete and return. Once you have enrolled in the program, we will touch base with you every 12 to 18 months to make sure we have your latest contact information and to provide you with a current list of contact names and numbers in the event of your death. We can also keep you updated on current research projects in which you may be interested in participating. We are always happy to talk with you about your current treatment and options that might be available to you.Information Sheet - basic demographic data (name, address, date of birth, etc.)
Donor Registration Form - your name, your caregiver or next of kin, your primary care physician and funeral arrangement information
Information Packet - a full description of the program, contact information, donor cards/letter of consent, release of information form
Check List - to help you know what forms to return and which to keep for your records
Medical Release Form – to allow us to get all sleep-related records from your primary care giver
When should enrollment take place?
Any time. We will keep in contact with you over the years to be sure that we have current information about you and that you have our updated contact list.-
Who organizes autopsy services once enrollment takes place?
At the time of death or when death is imminent, a family member, loved one or medical professional needs to contact us. Once we have been informed, our goal is to make all neccessary arrangements and contact all interested parties behind the scenes with minimal or no disruption to you or your family members. Will brain donation disfigure the body?
No. The examination is performed like a surgical procedure under the supervision of a pathologist. There is no difficulty with an open casket. There is minimal delay that should not affect funeral preparations.What does it cost?
There are no costs to the family associated with the donation.If I don't complete the paperwork, can my family still authorize the donation?
Certainly. It’s a good idea to make family members, loved ones and your physician aware of your intention to donate.Can I change my mind?
Of course. At any time you can withdraw your consent.Can I donate my tissue for narcolepsy research and still donate my organs for transplantation?
We will try our best to work with other agencies to help facilitate both a brain donation and donation of other organs.- Can I register for the Brain Donation Program online?
You can either download the forms or we would be happy to send you the information in the mail. If you wish to have the forms mailed to you, please contact Mali Einen, our clinical coordinator, and she will arrange to have the forms sent to you. For online access, you will need to download each of the following forms:- Welcome Letter
- Basic Information
- Medical Records Release Form
- Consent Form
