In addition to neurological medical records, the Mayo Clinic requires every family to complete a questionnaire about the person making a brain donation.
The questionnaire is three pages:
- demographic information, the diagnosis, year of symptom onset, year of diagnosis, and first symptoms (first page, labeled “page 9”)
- a checklist of movement, cognitive, autonomic, vision, sleep and other symptoms (second page, labeled “page 10”)
- medication information, work/career details, brain injury history, and family medical history (third page, labeled “page 11”)
This webpage describes the process for completing the family questionnaire and how to submit it to the Mayo Clinic.
Family Questionnaire
The Family Questionnaire is a pre-printed form. You can either fill out the questionnaire on your computer and then save the completed questionnaire as a new PDF or you can print it out and handwrite in your answers.
Submit a family questionnaire if your family member has a clinical diagnosis of any neurological disorder.
The “Current Neurological Diagnosis” section (on the first page), lists four rare disorders — PSP, CBD/CBS, MSA, and FTDP. (This is because the questionnaire was created by CurePSP for the Mayo Clinic.)
You may check “Other” and add in the diagnosis. “Other” may include AD, PD, LBD, FTD, Pick’s, PPA, SD, ALS, CTE, or something else. (Please spell out the full name of the disorder.)
We suggest you ignore the questions about hospice and skilled nursing/assisted living facility residence (on the third page).
Attaching More Details – A Family Narrative
The Mayo Clinic is hoping you will attach extra pages because there’s insufficient space on the questionnaire to give lots of detail. Of course lots of detail can help researchers. A personal narrative can capture your family’s insights into the neurological journey.
Your family may already have those details at your fingertips. For example, if your family keeps a symptom journal to assist doctors in your family member’s care, we suggest making a copy and attaching it to the questionnaire.
Another example: you may have a current medication list that is easily attached to the questionnaire.
Some useful information to provide in an attachment:
- summary of past diagnoses by neurologist, psychiatrist, or neuropsychologist
- a timeline and summary of major neurological symptoms, from age of onset to the present
- whether your family member had a severe case of covid-19
- examples of cognitive or dementia symptoms, behavioral changes, and personality changes
- hobbies, interests, and job history if you think this might be relevant to researchers
- whether the intended donor was part of a study or clinical trial
whether any genetic testing was completed
Any attachment(s) should have the intended brain donor’s full legal name, date of birth, and the name and contact information of the person providing the information.
Who should complete a questionnaire?
As long as one questionnaire is submitted per donor, this is sufficient.
Family members or close friends may collaborate to prepare ONE questionnaire. Certainly, the intended donor may also participate in completing the questionnaire.
Multiple family members or close friends may wish to complete SEPARATE questionnaires or statements as they may have different experiences, insights, and examples to offer.
Returning questionnaires to the Mayo Clinic
We HIGHLY recommend that family questionnaires be sent to Mayo via email or posted to the cloud. Second choice is fax. Third choice is by US mail, though we recommend you keep a copy for yourself.
Email to:
Dennis Dickson, MD
c/o Rachel LaPaille-Harwood, LaPaille-Harwood.Rachel@mayo.
Post to the cloud — Google Drive, Box, or other online file sharing service — with a link to the file(s) sent via secure email to:
Email: Rachel LaPaille-Harwood, LaPaille-Harwood.Rachel@mayo.
Fax to:
Dennis Dickson, MD
Fax: 904-953-7117
Note: Only actual faxes are accepted, no digital faxes.
Mail to:
Dennis Dickson, MD
Mayo Clinic Jacksonville
Birdsall 310
4500 San Pablo Road
Jacksonville, FL 32224
Phone: 904-953-2439