Pathologists and pathology specialists are an essential component of the brain recovery process and a pathology provider partner (PPP) participates in every brain donation. We use the term “pathology specialist” to refer to pathologists’ assistants, pathology technicians, and dieners.
In 2020 Brain Support Network (BSN) is on track to accomplish 150 brain donations, a number that has grown each year since we started our work in 2007. We also have a backlog of 100 donations that have been organized, but for which donors have not yet expired. As our operations grow, we need more and more PPPs to help us to execute our mission. This page describes how BSN works with PPPs, many of whom become repeat providers.
Please read through these requirements to understand our expectations.
BSN’s mission is to facilitate and organize the recovery of brains of persons diagnosed with any neurological disorder. Brain donation provides families with a confirmed diagnosis (from a neuropathology report) and supports research into the causes, treatments and cures for neurodegenerative disorders.
As almost all of BSN’s recovered brains are shipped to the Mayo Clinic in Jacksonville, Florida, for autopsy, we use the Mayo Jacksonville consent form (see below) and follow the Mayo Jacksonville protocol which requires that brains be recovered within 24 of death. BSN arranges for delivery of shipping containers to the PPP by Mayo. Pathology providers are paid directly by the family, though BSN guarantees that the PPP will be paid for their work.
Some brain donations are planned in advance, typically when the donor begins hospice care. Half are organized when end-of-life is imminent (hours, days away). Some are organized only after the donor has passed. BSN strongly prefers to make donation arrangements in advance. We know you do as well.
Mayo Clinic Protocol
Pathology provider partners (PPPs) must be able to follow the Mayo Jacksonville protocol for removing the brain, separating the brain hemispheres, preserving the tissue prior to shipping, and separately shipping the two brain hemispheres.
The harvest should be performed as soon as possible after death, preferably within 12 hours, though up to 24 hours is still acceptable. Brains recovered after this interval are not accepted by the Mayo Clinic. The time lapse between death and autopsy should be noted as well as the fresh brain weight when drained of CSF. This information should be recorded on Mayo’s Autopsy Information Form included with each hemisphere.
The brain is half frozen (right hemisphere) and half fixed (left hemisphere). Remember that the words “frozen” and “right” both have the letter “R”. Split the brain down the middle through the corpus callosum, cerebellar vermis, and brainstem. Put the right hemisphere in a plastic bag into the coldest possible freezer (preferably at -70˚C). If no freezer is available at the place of procurement, store the right hemisphere in dry ice. If no dry ice is available at the place of procurement, store the right hemisphere in wet ice until (and this period should be very brief) you can store the hemisphere in a suitable freezer or in dry ice.
In order to prevent distortion of the specimen, put the medial aspect of the brain down flat, so that it will freeze in its normal shape. The left hemibrain is simply immersed in formalin, buffered to neutrality.
If you do not have a suitable freezer (-70C is preferred; -30C is acceptable) for storage, you may use a suitable storage container and purchase dry ice. If you increase your fee to the family to cover this expense, this must be disclosed in advance so that the family knows the total fee.
See requirements and tips for shipping the brain hemispheres at bottom of this page.
COVID-19 UPDATE: Mayo Jacksonville is accepting brains from donors who have tested COVID-positive. Of course, this tissue should be clearly identified as COVID-positive.
COVID-19 UPDATE: In May 2020, the risks of contracting COVID-19 from the brain removal operation are still not fully understood. PPPs may want to adopt techniques that minimize the aerosolization of fluids (e.g. placing a wet towel and/or plastic sheet over the donor’s head and saw when using a bone saw).
Technical Qualifications and Requirements
Pathology providers must have access to:
- Bone saw, scalpels, etc.
- Formalin and container to immerse left hemi-brain completely
- A freezer (-70C is preferred; -30C is acceptable) or dry ice sufficient to last up to 6 days (which might be longer during winter holidays and the COVID-19 pandemic)
- Packing materials such as Ziploc-type plastic bags, chucks or paper towels
Because some families will organize viewings of the donor, incisions must be suitably closed.
BSN appreciates good communication, primarily via text and email. BSN needs the following from the pathology provider:
- Mobile phone number that accepts texts
- Email address
In the detailed instructions we send to families, hospice agencies, care facilities, funeral homes, and pathology providers, we ask for the hospice agency to alert both the pathology provider and BSN when end-of-life is imminent (within 48 hours). When you receive this alert, please relay it to BSN (cell 650-814-0848, email [email protected]). We will do the same.
Also, in the detailed instructions we send to all parties, we ask for the hospice agency to first notify the pathology provider and then BSN. When you receive this notification, please relay it to BSN (cell 650-814-0848, email [email protected]). Hospice is expected to provide this information:
- Unofficial and official TOD
- Time head icing began
Please double check that BSN has received this notification and these details. We will do the same. At that time, we ask you to inform us as to:
- Time the pathology work is scheduled
- Your need for shipping containers and dry ice as well as a shipping address
After the brain recovery is complete, we ask you to:
- Inform (text or email) BSN the time of brain recovery,
- Confirm that the family’s payment check was at the funeral home or that you have received the family’s payment online,
- Send the family a receipt for payment of your pathology services,
- Inform BSN of the FedEx tracking numbers prior to shipping and monitor the shipment of tissue to Mayo, and
- Send Brain Support Network the neuropathology report when it is received from Mayo (typically 3 months after death)
BSN does not set fees for pathology providers, though we do encourage you to set the fee for brain removal at or near the average in your region, which varies from $650 to $1000. BSN can tell you the average in your region. The national average is $750. We want a price that is fair to the family, but we also want a price that will cover your expenses and make the project worth your time and energy…and leave you ready to do more recoveries in the future.
In all cases of brain donation to the Mayo Clinic, families pay the PPP’s fee and BSN guarantees that the PPP will be paid.
Grants are available from two nonprofits to cover the cost of pathology work, but only for some diagnoses or in the case of financial need. The average grant reimbursement is $750 and not all families qualify. (CurePSP, which at one time made grants directly to pathology providers, has discontinued that grant program.)
As you know, many funeral homes or cremation organizations seek to charge prep room use fees, though we discourage these entities from charging fees. If incurred, these fees are also paid by the families.
Our standard procedure is to ask the family to leave a check, payable to the PPP, at the location of the brain recovery for pickup by the PPP. Because checks are less common today, consider the new consumer-friendly bank transfer mechanism: Zelle.
The “Zelle” service lets consumers send money to a PPP, identifying that PPP by the email address associated with the PPP’s bank account. Most retail banks in the US (e.g. Chase, BofA, Citigroup, Wells Fargo) offer the Zelle service. Registration with the bank is free. Use, via the bank’s web site, is free and transfers are made directly to the bank account of the recipient, generally the same day.
Timing and Backup Staff Considerations
As noted above, brains must be recovered within 24 hours of death; sooner is better. Brains must be stored (half fixed, half frozen) by the pathology provider until prepaid FedEx shipping containers and dry ice are delivered from the Mayo Clinic. Brain tissue should be shipped to Mayo on Monday or Tuesday, but never Thursday or Friday.
Pathology providers must be available seven days per week during the day (e.g. 7am to 7pm). We never expect work to occur in the middle of the night, though this is sometimes an option for the pathology provider.
We prefer to work with pathology providers who have a fully qualified back-up person or pathology service. This person or service will only be called upon in the event that you, the primary pathology provider, are unavailable at the time that the donor passes.
Consent Form Considerations
We use Mayo Jacksonville’s consent for brain procurement. It provides space to fill in the donor’s full name, DOB, with a statement that the donor’s next-of-kin (NOK), as signatory, gives permission for brain procurement according to the Mayo protocol. Further spaces are available to fill in the name of the pathology provider, location of the pathology work, transportation provider (if applicable) and to whom to release the body following the pathology work (if applicable).
Signature lines are at the bottom for the NOK, their relationship to the donor, date and time, and two witness signatures. Instructions for use are in the footnote. The second page spells out Mayo protocol and shipping information. Here is a consent form sample: page 1 and page 2.
COVID-19 UPDATE: During the time of COVID-19, the Mayo consent form, like many consent forms, now asks for only one witness signature due to social-distancing standards.
BSN will fill in all the details on the consent form for the family and deliver it to the family. The form can be signed in advance of donor death. In most states this form is sufficient. In a few states (e.g. Texas) a separate form, signed after time of death, is required.
If you have a non-Mayo consent form that must be signed, please email ([email protected]) or fax (650-233-9278) it to us so we can alert the family. Please make explicit if this consent form must be signed after the donor’s death.
Left and right hemispheres are shipped in separate containers. Brain tissue can be shipped to Mayo only on Mondays, Tuesdays, or Wednesdays (assuming no holidays on Thursdays or Fridays) for receipt that same week. Monday or Tuesday shipment is preferred–and during the COVID-19 pandemic shipments all shipments must be sent to Mayo on Monday or Tuesday.
When ready to ship, the frozen specimen should be placed in a plastic bag (e.g. Ziploc double-seal bag) in a Styrofoam shipping container that has outside dimensions of 11 x 9 x 15” and walls that are 1.5” thick. The cavity of the shipping container should be filled with dry ice so that the brain will not move inside the container if jostled and to keep the brain frozen for 48 hours.
The formalin fixed specimen should be wrapped in paper towels that are damp with formalin, and double-bagged in leak-proof plastic bags (e.g. Ziploc double-seal bags), and placed in a Styrofoam shipping container that has outside dimensions of 11 x 9 x 12” and walls that are 1.5” thick. Do not fill the Ziploc bag with formalin and remove all air from the bag. Pack the cavity of the shipping container (e.g. with air pillows) so that the brain will not move inside the container if jostled.
For both shipments, write the name of the donor and the donor’s DOB on the outer plastic bag with an indelible ink (e.g. a Sharpie).
BSN engages Mayo Jacksonville to provide reusable containers (plus dry ice for shipping, if necessary) and prepaid FedEx overnight shipping labels once the pathology work is completed. Mayo will NOT provide containers and dry ice in advance of death.
PPPs may find it more convenient to simply order their own shipping containers from Fisher Scientific or U-line and to procure their own dry ice. Mayo uses Sunoco containers, with 1.5” styrofoam insulation, purchased from Fisher Scientific:
- Sonoco 321UPS (Fisher #03-530-52) 11 x 9 x 11.9” (outside dimensions) for the fixed hemispheres: eight containers sold for $180 (in May 2020), shipping extra.
- Sonoco 324UPS (Fisher #03-530-54) 11 x 9 x 14.5” (outside dimensions) for the frozen hemispheres, eight containers sold for $199 (in May 2020), shipping extra.
Comparable containers are available individually from U-line with reasonable shipping fees:
- Uline 7359, 11 x 9 x 12” (outside dimensions) for the fixed hemispheres: one container sold for $45 (in May 2020), shipping extra, but as low as $20 for overnight shipping, depending on your location.
- Uline 11355, 11 x 9 x 15” (outside dimensions) for the frozen hemispheres, one container sold for $50 (in May 2020), shipping extra, but as low as $20 for overnight shipping, depending on your location.
The FedEx prepaid overnight shipping labels, prepared by Mayo, are suitable only for containers of these dimensions and corresponding weights. Whether you use containers of these standard dimensions or have your own shipping containers and dry ice, Mayo will provide a link to a prepaid shipping label on the FedEx website. If you use your own containers, be aware of and adhere to the dry ice labeling requirements imposed by Fedex.
The Mayo Autopsy Information Form should be filled out and sent along with the tissue in each of the two containers. Each box (do not tie boxes together) is to be sent overnight by Federal Express, Priority One Delivery. Both packages should be addressed to:
Dennis Dickson, M.D.
Mayo Clinic Jacksonville
4500 San Pablo Road
Jacksonville, FL 32224
(904) 953-2439 or (904) 953-7137
COVID-19 UPDATE: Since the COVID-19 pandemic began, Mayo is shipping out containers and dry ice only on Mondays, for arrival on Tuesdays at the PPP’s address. PPPs may need to store tissue for up to a week before it can be shipped. If Monday is a holiday (e.g. Memorial Day, 2020), no containers will be shipped out that week. This is another motivation to consider buying your own shipping container and procuring your own dry ice.
Following are a collection of tips that may be useful to accomplish the shipping task with minimal stress and surprise.
- Many PPPs prefer to send the frozen (right) hemisphere as soon as possible (keeping in mind Mayo Jax’s day-of-week shipping requirements) and wait until the hemisphere in formalin is fully fixed (after seven to ten days) before sending it. However, it is our understanding from discussions with Mayo Jax, that Mayo Jax does not require the tissue in formalin to be fully fixed before sending.
- As noted above, the formalin fixed-specimen (left) hemisphere should be wrapped in formalin-soaked towels and double-bagged. The reason not to over-fill the “inside” bag with formalin comes from the risk of leakage/spoilage that can occur, and that once caused FedEx to suspend transport of a container.
- Any good quality Styrofoam shipping container can be used, though pay attention if (a) the container is too small to hold enough dry ice or (b) is bigger than the Mayo standard which will require that the prepaid shipping label be updated to reflect the size/weight of the package.
- As noted above, double bag both the formalin and frozen hemibrains prior to shipping. Do not use RED biohazard bags. Dry ice damages this type of plastic.
- Label the outside of the bags in both shipping containers with the donor’s name and DOB using a dark colored Sharpie marker. In the off-chance you are shipping tissue from two donations together (frozen specimens in one container and fixed specimens in a second container), place each hemibrain in its own two Ziploc bags and label the outside bag with the donor’s name/DOB using a black Sharpie marker, writing directly on the bag. Do NOT use stick-on labels or tape, as these fall off.
- Under no circumstances should wet ice be used for shipping. Only dry ice should be used for the right hemibrain.
- The Mayo Autopsy Information Form should be included in each of the (two) containers.
- The reason that the brain must be shipped early in the week is because there’s no one at Mayo Jacksonville to receive the shipment on the weekends. Never ship on Thursday or Friday, and do not ship when the next day is a holiday. Given recent problems with FedEx and the container with dry ice we strongly advise against shipping on Wednesday. Best to ship on Monday or Tuesday and track the shipments closely.
- Before shipping, please check the FedEx website for service alerts to be sure that there are no weather conditions in Florida, Memphis/Tennessee (FedEx hub), or other locations that would delay shipping. FedEx’s webpage is:https://www.fedex.com/en-us/service-alerts.html
FedEx has a link on its website to the National Weather Service’s weather map, showing severe weather.
- Note that some pathology service providers have reported that FedEx has been unwilling to pick up or accept containers with dry ice. If you want FedEx to pick up the containers, call 1-800-GoFedEx or, if you have a FedEx account, log in.Please double-check with FedEx delivery staff who pick up from a usual location as to whether they have a problem with picking up dry ice.If you want to drop off containers, corporate FedEx locations will accept containers with dry ice. Many “FedEx Office” locations will not. If you have questions about this, please call 1-800-GoFedEx.
- We’ve also had the situation where FedEx has accepted a container with dry ice, only to return it or delay delivery. Once, in January 2016, a regular FedEx location accepted the package containing dry ice and then returned it to the pathology specialist’s address a few hours later, offering no explanation as to why it had been accepted earlier at the FedEx location only to be rejected later. Twice in May 2016, FedEx delayed the delivery to Mayo of two containers where the label showed dry ice (“ICE”) was included. Fortunately in both cases, tissue was shipped out on a Monday so we had a couple of days’ leeway to resolve the problem with FedEx.
- Immediately after shipping the PPP should send a cell phone photo via text to Brain Support Network (cell phone 650-814-0848 accepts texts) of the tracking numbers of the two containers. Or, send email to [email protected]
- Around the year-end holidays, Mayo will often request that shipment be delayed. It is best around the year-end to check with Mayo or Brain Support Network in advance of shipping.
- Note that hurricane season officially begins on June 1st every year and disruptions during the summer are common.