ALLFTD stands for ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration. Brain Support Network is honored to be part of the ALLFTD study, a multi-site consortium focused on researching frontotemporal degeneration. Our role is to assist ALLFTD centers with accomplishing brain donation in the case that those centers don’t have their own brain bank. In this case, Brain Support Network will assist the center in making arrangements for the brain to be sent to the Mayo Clinic in Jacksonville. And we will inform Mayo that this brain is part of the ALLFTD study.
Required Information
To investigate whether a brain donation for an intended donor is possible, Brain Support Network needs to know some information from your center. We are happy to speak with the intended donor’s family as a means of collecting this information.
- Donor’s full name, DOB, and city/state where currently living
- Funeral home or cremation organization. (We are assuming that the family does not want joint brain/body donation. We can accommodate joint brain/body donation but need to know in advance.) Note: We use the term “funeral home” below to refer to a funeral home,
- If donor is on hospice
- If donor lives in a care facility and, if so, is this a skilled nursing facility or assisted living? We need to know the city/state of the care facility.
- During the time of COVID-19, we need to know if the intended donor:
– Has ever tested positive for COVID-19
– Was presumed to have had COVID-19 based on symptoms (but was not tested)
– Has tested negative or positive for COVID-19 in the last 14 days,
– Lives in a care facility where residents or staff have tested positive for COVID-19 in the last 14 days, or currently has COVID-19 symptoms (and death is imminent).
We will call the funeral home and locate a pathology provider. We can tell you what the brain donation fees are, if the work is done at the present time. Of course if the intended donor’s COVID-19 status changes at the TOD, that may change the brain donation status.
Costs
Your center will be covering all brain donation costs. On average, the total costs are $1000. This almost always includes a fee from the pathology provider. About half the time, this includes a facility-use fee charged by the funeral home. Sometimes the facility-use fee is different on nights/weekends/holidays than during regular business hours.
In cases where the funeral home is not cooperative with the brain recovery being done on-site, there are additional fees, including transportation to a cooperative location and a facility-use fee at the cooperative location. The cooperative location may be another funeral home.
We will inform you upfront what these costs are so that you can agree to paying them. These costs are due to the providers at the TOD.
Brain Support Network will pay these costs at the TOD. Brain Support Network must be reimbursed for these costs by your center within 30 days of our invoice. We can supply a W9 or whatever documentation your center’s accounting folks need. It is the principal investigator’s responsibility to be sure that Brain Support Network is reimbursed promptly.
Service Fee
For our efforts planning the brain donation, confirming the plan in advance of death (for those cases that are planned in advance), monitoring the brain donation at the TOD, and succeeding in having the brain delivered to the Mayo Clinic, Brain Support Network charges your center:
- $1000, if you are planning in advance (or if you pay by credit card at the TOD — see below)
OR
- $2000, if you are contacting us when death is imminent (suspected as being within two weeks) or death has occurred.
Brain Support Network must be reimbursed for this service fee by your center within 30 days of our invoice. We can supply a W9 or whatever documentation your center’s accounting folks need. It is the principal investigator’s responsibility to be sure that Brain Support Network is reimbursed promptly. Any invoices paid between 35 and 45 days will be assessed a 5% late fee. Any invoices paid between 46 and 66 days will be assessed a 10% late fee.
If you prefer to pay the costs (pathology provider fee, facility-use fee, possible transportation fee) and the service fee to Brain Support Network by credit card within 24 hours of the brain recovery, our service fee is $1000.
Major Items to Address
Of course every center has its own way of operating. These are the major issues that need to be addressed:
Payment Timeframe: Do you plan to pay the brain donation fees and the service fee at the TOD or do you prefer to be invoiced?
Consent: We need a consent form to be signed by the legal NOK and shared with us.
The consent form must provide the intended donor’s full legal name, DOB, NOK’s (or healthcare agent’s) name and signature, witness name and signature, name and phone number of where the recovery is taking place (usually a funeral home or cremation organization), and name of the pathology provider doing the recovery.
We will assume that a consent can legally be signed *pre-mortem* in your state, unless we are told otherwise. So the date/time of the NOK’s signature will be on the consent, assuming a pre-mortem signature.
“Sharing” can take place via fax (650-233-9278), cell phone text (650-814-0848), or email ([email protected]).
When Death is Imminent: We must be notified when death is within 3 days so that we may re-confirm advance arrangements. Who will be alerting us — your center, the family, hospice, or the care facility? If the COVID-19 pandemic is still present at the time of this alert, we need to know the donor’s COVID-19 status:
- Has ever tested positive for COVID-19
- Was presumed to have had COVID-19 based on symptoms (but was not tested)
- Has tested negative or positive for COVID-19 in the last 14 days
- Lives in a care facility where residents or staff have tested positive for COVID-19 in the last 14 days, or
- Currently has COVID-19 symptoms (and death is imminent).
We prefer to be in touch with hospice (or the hospital or skilled nursing facility) and the care facility when death is imminent. Will you be able to learn hospice’s and the care facility’s contact information from the family? If not, please be sure the family passes on these icing instructions.
Notification: We must be notified when death occurs so that we may monitor the brain donation. We are generally available M-F 5am to 8pm PT, and Sat/Sun/holidays 8am to 8pm PT. We need to plan what needs to happen if you need to notify us outside of these hours.
Medical Records: We assume you will be providing all specialist medical records to the Mayo Clinic Jacksonville. If the intended donor was seen outside of your center for any neurological care, will you be providing those records to Mayo as well?
Other
We will keep you posted as to the brain recovery and brain shipment to the Mayo Clinic. If you would also like us to update the family, please let us know.
If you have questions at other points in the process, please let us know. We are willing to provide detailed, written instructions to all (or some) parties — your center, the family, funeral home, pathology provider, hospice, and care facility — in advance of the brain donation.
Questions?
Please contact Robin Riddle, cell 650-814-0848, email [email protected]