NICHD Brain and Tissue Bank

19 May

Thinking about death is just no fun. Plain and simple. It isn’t fun to plan ahead for a future where you or a loved one is no longer here. Many of us avoid planning for death because it is so hard to think about. But we should face those fears. Depending on your circumstances, you may either be a person being supported, or you may be supporting others. Obviously, some form of financial planning is key, especially within the disability community. Shannon Rosa discussed this topic at The Thinking Person’s Guide to Autism.

But there are other things to think about too. When Eric Courchesne spoke at IMFAR, he started out by noting how there are very, very few sources of postmortem brain tissue. There are really only a few dozen. According to the NICHD (National Center for Child Health and Human Development), here’s what’s in the brain bank:

Autism = 43
Autism-Pending = 10
Autism suspected = 8
Pervasive developmental disorder = 1
Unaffected autism relatives = 3

ASD related:

Rett = 10
Asperger = 4
Angelman = 5
Epilepsy/seizures = 61
Tuberous Sclerosis = 34

That’s it. And this has to serve:

Number of researchers who have received tissue = 72
total autism tissue samples distributed =>1,500
total control tissue samples distributed for autism reearch = >2000
Number of autism papers that utilized NICHD tissue = 82
Number of autism abstracts that utilized NICHD tissue = 103

If you want more information, go to There you can register yourself or your minor child as a tissue donor.

OK, it isn’t the way any of us want to contribute to autism science. But just look: there are 43 autism cases available. That’s it. We all know about the diversity of the autism population. 43 is a pitifully small number.

Tissue needs to be collected within 24 hours. Let’s face it, no one wants to have to face the decision of whether to donate a loved one’s tissue in that time of immense grief. Plan ahead. register

4 Responses to “NICHD Brain and Tissue Bank”

  1. passionlessDrone May 19, 2011 at 15:34 #

    Hi Sullivan –

    Important topic. We’ve been registered for a while. The twenty four hour thing is a tough piece of reality to consider dealing with, but is critical.

    I’ve spoken with researchers who have stated with some clarity that a lack of tissue is a big problem. Even worse, I do not believe that almost any of the tissue has autism severity attached, which further complicates issues.

    Nice post.

    – pD


  1. Brain and Tissue Donations Needed for Autism Research « - May 24, 2011

    […] To continue reading, click here. […]

  2. Freezer failure at brain bank hampers autism research « Left Brain Right Brain - June 11, 2012

    […] can read more about one tissue bank here in the article NICHD Brain and Tissue Bank. No one wants to think about making the decision to donate one’s tissues, or those of a loved […]

  3. Autism Science Foundation to Develop Brain Tissue Awareness Campaign « Left Brain Right Brain - October 3, 2012

    […] last year was that brain tissue is critical to many areas of autism research and that there is very little tissue available for research. OK, that’s two things. This year saw an amazingly sad event where a large number of brain […]

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