One of the key benefits of brain donation is that it enables donated tissue to be used for future research. Families are understandably interested in knowing how their loved one’s donated brain has been used in research.
The Mayo Clinic Brain Bank does not update families on this. With hundreds of brains in their brain bank, it would be impossible to keep all families with all diagnoses updated.
So we recommend to families what we do — look at PubMed (pubmed.gov). PubMed is a US government-funded database of all published research articles around the world.
Conduct a search
Conduct a search in PubMed (pubmed.gov) along these lines:
XYZ (diagnosis) autopsy confirmed Mayo Dickson
XYZ is either the clinical diagnosis of your loved one or the neuropathologic (confirmed) diagnosis of your loved one.
If the neuropathologic diagnosis, it’s best if this is written in the same language as was in your family member’s neuropathology report from Mayo. Some common neuropathologic diagnoses we see are:
* Alzheimer’s disease
* Lewy body disease (which are some of the words used when the diagnosis is Parkinson’s Disease, PD Dementia, Lewy body dementia, or dementia with Lewy bodies)
* frontotemporal lobar degeneration (which are the words that might be used when referring to frontotemporal dementia, primary progressive aphasia, or semantic dementia)
* progressive supranuclear palsy
* corticobasal degeneration
* multiple system atrophy
* motor neuron disease
* argyrophilic grain disease
The words “autopsy confirmed” are included in the search as we are hoping to find only the research that includes donated brain tissue.
The words “Mayo” and “Dickson” are included in the search as this refers to Dr. Dennis Dickson, the neuropathologist at the Mayo Clinic. If any research is published around the world utilizing brain tissue donated to the Mayo Clinic, Dr. Dickson will be given credit.
Search results usually go back many years. You can refine the search by clicking on “Publication Date.” Example: let’s say your family member died in 2016. You can select “1 year” to find articles published in the last year.
Look at the “Methods” section
Say that this refinement yields one article. You can look — for free — at the abstract of the article. Pay attention to the “Methods” section of the abstract. This will provide a date range. Example – “We assessed the distribution and severity of [some] pathology in [number] autopsy-confirmed XYZ [diagnosis] patients collected from YEAR to YEAR.” Did your family member’s brain arrive at the Mayo Clinic Brain Bank during that timeframe?
You can perform this same search every so often.
Sign up for email alerts
What we at Brain Support Network do is sign up for email alerts whenever research is published using this search criteria.
It is very exciting when your loved one’s donated brain tissue has been used in research!
We at Brain Support Network will try to keep our blog site updated whenever we see research utilizing donated brain tissue that we’ve helped make arrangements for getting that tissue to Mayo’s researchers.
Thank you for donating your loved one’s brain! You’ve helped us all by enabling research.
Robin