Someone emailed me this question today about where a loved one’s brain should be donated:
“Robin – I know you favor the research facility in Florida. How have you reached the conclusion that Mayo Jax is the best?”
Here’s my answer.
There are two key reasons to donate a loved one’s brain — to confirm the diagnosis and to enable research. Brain bank evaluation needs to consider both of these objectives.
With the goal of confirming a diagnosis, these items are important:
* the speed of getting a neuropathology report to families. (Mayo Jax does in 6-8 weeks what it takes 8-16 months for other brain banks to do.)
* the thoroughness of the neuropathology report. (Ask for an idea of how many pages the report will be. Or ask for a sample report for someone diagnosed with the disorder you are interested in. Incredibly, I’ve seen two-sentence neuropath reports!)
* the standing of the neuropathologist, and how many cases he/she has seen of the disorder you are interested in. (I have seen several neuropath reports where the neuropathologist says “this looks like PSP but it also looks like CBD.” In those cases, I’ve suggested that the family order brain tissue be sent to Mayo Jax, and the neuropathologist there comes up with a conclusive diagnosis quite easily. You want someone who has seen lots of cases before such that diagnosis is very straightforward.)
* the financial cost to the family in working with that brain bank. (The disadvantage of Mayo Jax is that the family may pay up to $1500 to accomplish brain donation.)
* the “hassle” to the family in working with that brain bank. This includes how extensive the required paperwork is, the family’s involvement in ordering medical records, and the requirement to find a person to do the brain procurement.
With the goal of utilizing brain tissue for research, these items are important to consider when evaluating a brain bank:
* the quantity of PSP brains they have. If you have a lot of tissue, you can consider brain research. If you have a few dozen brains, it’s probably not enough for a major research article. How do you find this out? Ask the brain bank coordinator how many PSP brains (or whatever the disorder is) they have in their brain bank. Look at the Schellenberg PSP/CBD genetics update to see how many brains were contributed by the various institutions around the world. (See: http://forum.psp.org/viewtopic.php?t=8223)
* the quantity of medical journal articles being published by that brain bank utilizing brain tissue for the disorder of interest. How do you find this out? Ask the brain bank coordinator for a list of all the published journal articles by the neuropathologist on a specific disorder. Or, do a PubMed search (pubmed.gov) with the name of the disorder and the name of the institution (or neuropathologist).
* how long will this brain bank likely be around? Sadly, there is a brain bank located in the LA area that is on the verge of shutting down its freezers, and no longer accepts PD or atypical parkinsonism brain donations! Many major US brain banks are severely cutting back due to the financial situation in the US. (Both UPenn and UCSD no longer accept MSA brain donations though the families/patients were told they could donate brain tissue her upon death. One Southern California woman’s dying wish to donate her brain could not be met by the family because of this problem.)
In the case of PSP/CBD brain donation, Mayo Jax is absolutely the best choice. If you donate a brain here, CurePSP will reimburse part of your brain donation costs. (Lately, the grants have been about $700.)
I mentioned that there are two key reasons to donate a loved one’s brain — to confirm the diagnosis and to enable research. Other reasons our family had or reasons I’ve heard from others include:
* since the diagnostic accuracy of the disorder your loved one was diagnosed with may be less than 55% (this is the case for PSP-parkinsonism, CBD, MSA without early autonomic symptoms, and DLB), the *only* way to in fact discover the diagnosis is upon brain donation. An excellent MD’s best guess is insufficient for most disorders.
* have something hugely positive come out of a bad situation.
* in case something inherited or genetic is ever discovered about PSP or CBD, blood relatives can have certainty in the diagnosis of their loved one.
* many people have said to me that their loved one had a scientific mind and would want to participate in a scientific endeavor.
* many people have said to me that their loved one was a very generous person and would want to make this most generous of donations. Some point to the fact that their loved ones are organ donors.
* one woman said to me that donating her loved one’s brain was the last step in caring for him. She felt that brain donation was a natural extension of caregiving.
* many people report peace of mind in knowing the final diagnosis.
What’s your opinion about these things?
Robin