BRAIN ENDOWMENT for AUTISM
RESEARCH SCIENCES (BEARS) PROGRAM
Working Tog
ether
for Today’s
Treatments a
nd Tomorrow’s Cures
The MIND Institute
Brain Endowment for
Autism Research Sciences
(BEARS) Program is committed
to advancing research around
the world to find the causes
of, develop treatments and
ultimately preventions for
neurodevelopmental disorders.
This questionnaire is meant to help
researchers obtain a complete
and accurate profile of the donor.
Thank you for your support and
involvement with the BEARS Tissue
Program.
You can choose to email or send the Questionnaire to the
address below. If you would like assistance with completing
the form, please call our toll-free number listed below. Our
Program Coordinator will be happy to answer any questions
you may have pertaining to the Questionnaire or our program.
UC Davis MIND Institute
Brain Endowment for Autism
Research Sciences (BEARS) Program
2825 50th Street
Sacramento, CA 95817
24-Hour Toll Free: (855) 221-HOPE
MINDBEARS@ucdavis.edu
www.mindbears.ucdavis.edu
CONFIDENTIAL
BEARS BRAIN DONOR QUESTIONNAIRE
This questionnaire will help us document important information relating to the donor. All information provided on this
form, as well as all of the donor’s medical records, will solely be used for research purposes and kept confidential by the
MIND Institute BEARS Tissue Program. We request that you complete the questionnaire as fully as possible, and return
to us preferably within two months. Thank you for your involvement and commitment to this program.
PLEASE PRINT CLEARLY
I. BACKGROUND INFORMATION
Name of donor:_________________________________________________________
First
Middle
___________________________
Last
(Maiden)
Last residence: _______________________________________________________________________________________
Street
City
State
Zip Code
Date of birth: ____________________________________
Place of birth:
City___________________________ State/Province__________ Country _________________________
(As listed on the birth certificate)
Social Security Number: _______ -_______-_______
Gender:
Male
Female
Father’s name: _______________________________________________________________________________________
Mother’s maiden name: ________________________________________________________________________________
II. SUPPORTING DOCUMENTS (Please include copies of any of the following documents. The BEARS Tissue Program will
reimburse document purchase, copying and postage expenses).
The donor’s death certificate (if possible at this time)
The donor’s birth certificate
Clinical records you may have concerning the donor or his/her family’s medical history
(i.e. autopsy report, psychological reports, educational evaluations, medications, etc.)
III. INFORMANT Please indicate who provided the information on this questionnaire and their relationship to the donor.
Name:_________________________________________________________ Phone: ______________________________
First
Middle
Last
___________________________________________________________________________________________________
Street (if different from above)
City
State
Zip Code
Relationship with donor:_______________________________________________________________________________
If the informant’s named above is not the surviving legal next-of-kin of the donor, please write the name and address of the
next-of-kin here:
___________________________________________________________________________________________________
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IV. PERSONAL INFORMATION ON DONOR
A. Was the donor:
right-handed or
left-handed?
B. What was the donor’s height and weight at the time of death?
____________ Feet
____________ lbs.
C. What hazardous substances, if any, had the donor been exposed to?
_____________________________________________________________________________________________
V. BIRTH HISTORY
A. What was the birth order of the donor (first, etc.)?_____________________________________________________
B. What time of day was the donor born?________________________________________________
C. Birth weight: ____________ lbs.
AM
PM
____________ oz
D. Please indicate any complications during pregnancy or at birth:
Difficulty in conception
Prolonged labor
In vitro fertilization
Prolonged delivery
Measles
Prematurity
German Measles
Prolonged pregnancy
Excessive swelling
Low Oxygen
Flu
Infections
Toxemia
Seizures
Excessive vomiting
Trauma
Emotional problems
Forceps
Anemia
Breech
Abnormal weight gain
Jaundice
Vaginal Bleeding
Anesthesia during delivery
High blood pressure
Incubator
Rh incompatibility
Caesarean Section
Labor induced with Oxytocin (ptocin?)
APGARS 1 min_____ 5 min _____ 10 min______
Medications used during pregnancy. Describe: _____________________________________________________
Cigarettes. Frequency: ________________________________________________________________________
Alcohol or other substances (e.g. cocaine, marijuana). Frequency: _____________________________________
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VI. MEDICAL HISTORY
Doctor’s Name & Specialty
Address
Phone or Email
Did the donor have any medical conditions? If the answer to any of these is ‘yes,’ please provide more details on the nature
of the condition.
Characteristic /
disorder / condition
No
Yes
Nature of Condition
Irregular or unusual body or
facial features
Ear / hearing (e.g. recurrent
infections)
Vision problems
Difficulty with sleeping
Irregular response to pain
Irregular response to temperature
Hyperlexia (superior reading
skills)
Special food interests or
faddisms
Allergies
Enlarged head circumference
Gastrointestinal Problems
(e.g. GERD, loose stools)
Other Conditions
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VII. MEDICATIONS (Please either fill in below, attach records, or list the name and address of the person that we can
contact to retrieve records.)
History of Seizures:
YES
NO
Epilepsy Diagnosis: _____________________________________________Age of onset:____________________________
Approximate Dates
(start with most recent) Medication
Dosage
Was it effective?
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
Immunization History (please attach records or list):
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
VIII. MAJOR/RECENT MEDICAL OR PSYCHIATRIC HOSPITALIZATIONS (Please either fill in below, attach records,
or list the name and address of the person that we can contact to retrieve records.)
Admission Dates
Hospital/Doctor
Reason for Admission/Result
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
___________________________________________________________________________________________________
IX. INFORMATION REGARDING DONOR’S DEATH
What was the date and time of the donor’s death? _________________________________________________________
What was the primary cause of death? __________________________________________________________________
Were there contributing cause(s) of death? _______________________________________________________________
Was a complete autopsy performed?
YES
If yes, will you attach a copy of the autopsy?
NO
YES
NO ____________________________________________
Coroner or Medical Examiner & County
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Additional information that might help researchers:
Was the donor enrolled in any biological, genetics, or response to medication research studies? Also, was the donor
involved in any specific training or treatment programs (e.g. ABA, TEAACH, Speech or Occupational Therapy Programs,
etc.)? If so, list the program and the person we can contact to retrieve additional records. Please also provide any details that
might be useful (e.g. if any biological samples were tatken). Are there any additional available research data pertaining to
the donor? If so, please attach copies. Thank you.
The study or
training program
Location
Time Frame
Contact Person
(address, phone number, email, etc).
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X. FAMILY HISTORY
In some cases, the family members of our donors might also be diagnosed with similar behaviors within the ‘autism
spectrum’ or with other conditions. Please either:
A. Check the box if the condition/behavior was present in the donor.
B. Check the appropriate box for the biological relative (related by blood) who have or had similar behaviors and
conditions as the donor. Please indicate whether they are the donor’s father, mother, son, daughter, aunt, uncle,
nephew, niece, cousin, grandmother or grandfather. Note that there is a separate box for brothers and sisters.
Please be specific and indicate whether they were fraternal/identical twins or half-brothers/sisters.
CONDITION
Donor
(check box or
comment)
Brothers/
sisters
(indicate if they were
identical/fraternal twins
or halfbrothers/sisters)
Donor’s Maternal
Relatives
(Mother’s side of family includes
donor’s mother, maternal aunt,
and grandmother, etc.)
Donor’s Paternal
Relatives
(Father’s side of family includes
donor’s father, paternal aunt,
grandmother etc.)
Allergies
Asthma
Frequent ear/sinus
infections
Hearing problem
Lupus
Multiple Sclerosis
Rheumatoid Arthritis
Colitis, Irritable bowl,
Spastic Colon
Celiac Disease
Diabetes
Thyroid Problems
Immunodeficiency
Problems
Tics or Tourette Syndrome
Epilepsy
Autism / ASD /
Asperger Syndrome
Difficulty w/ Social
Interaction
Speech problems
(includes slow development in verbal skills)
Repetitive Behavior
Unusually Focused on
special interests (includes
portraying unusual expertise on a topic)
Intellectual Disability /
Mental Handicap
Specific learning disabilities (dyslexia, dyspraxia,
etc.)
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CONDITION
Donor
(check box or
comment)
Brothers/
sisters
(indicate if they were
identical/fraternal twins
or halfbrothers/sisters)
Donor’s Maternal
Relatives
(Mother’s side of family includes
donor’s mother, maternal aunt,
and grandmother, etc.)
Donor’s Paternal
Relatives
(Father’s side of family includes
donor’s father, paternal aunt,
grandmother etc.)
ADD / ADHD
Attention problems
Hyperactivity
Impulsive Behavior
Behavior Problems /
Conduct / Disorder /
Oppositional / Defiant
Disorder
Excessive Aggression
Substance Abuse
Problems
Chemical Abuse
Alcohol Dependency
Mood Swings
Depression
Anxiety
Obsessive Compulsive
Disorder
Psychosis
Bipolar Disorder
Other conditions
(please list)
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The following section will assist us with epidemiological research. As many diseases often affect groups with
particular racial or religious backgrounds, we would be grateful if you could indicate the ethnic background
and country of origin of the donor’s parents and circle the ethnic origin(s).
MOTHER
Country of birth: _________________________________
Ethnicity:
White North European
White Mediterranean
White East European
Hispanic Spanish/Portuguese
Black African
Afro-American
Caribbean Hispanic South American
Asian South-east Asian
American Indian
Pacific Islander
(e.g. India, Pakistan)
(e.g China, Japan)
Other ______________________________________________________________________________________________
Please identify
Mixed origin _________________________________________________________________________________________
Please describe
FATHER
Country of birth: _________________________________
Ethnicity:
White North European
White Mediterranean
White East European
Hispanic Spanish/Portuguese
Black African
Afro-American
Caribbean Hispanic South American
Asian South-east Asian
American Indian
Pacific Islander
(e.g. India, Pakistan)
(e.g China, Japan)
Other ______________________________________________________________________________________________
Please identify
Mixed origin _________________________________________________________________________________________
Please describe
ADDITIONAL INFORMATION:
How would you like to receive new research information?
Updates on our website: Updates through email: Updates through regular mail: YES
YES
YES
NO
NO
NO
CONTACT WITH OTHER FAMILIES
Would you like to be in touch with other family members of donors within the tissue research programs network?
In your state: In the U.S. and other countries: Through a secure section of a website: YES
YES
YES
NO
NO
NO
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COSTS
If you have incurred costs in relation to this tissue donation, please note them on this page and attach receipts for
reimbursement.
___________________________________________________________________________________________________
How did you hear about the BEARS Tissue Program?
___________________________________________________________________________________________________
Thank you for completing this questionnaire.
We understand that this can be a difficult experience for you. The BEARS staff is not only
available to ensure that the entire donation process is properly carried out, but also as a
source of continued support for you and your family. We appreciate your involvement
with our program and hope to keep in touch with you in the near future.
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