BRAIN
AND TISSUE BANK FOR
DEVELOPMENTAL DISABILITIES
(in contract to the National
Institute of Child Health and Human Development)
University of Miami
Department of Pathology
P.O. Box 016960 (R-5)
Miami, FL 33101
1-800-59-BRAIN
(Toll Free)
Office: 305-243-6834
Fax: 305-243-6970
E-mail: BTBcoord@med.miami.edu
Web site: http://path.med.miami.edu/btb/
MEANINGFUL
RESEARCH
Hundreds of babies a year are diagnosed with devastating disorders
of development for which there is little understanding. Chromosomal
disorders, encephalopathies, aminoacidopathies, leukodystrophies,
hyperammonemias, neuromuscular disorders, developmental brain
disorders (hydrocephalus anencephaly), Tourette's Syndrome, neurofibromatosis,
tuberous sclerosis, sudden infant death syndrome, unexplained
mental retardation, autism and other childhood disorders are perplexing
medical mysteries whose unsolved answers will only be found with
continued and dedicated research. For this reason, the Brain and
Tissue Bank for Developmental Disorders is funded by the National
Institutes of Child Health and Human Development with the expressed
goal of advancing meaningful research. It serves the critical
purpose of collecting, preserving and distributing human tissues
to qualified scientific investigators dedicated to the improved
understanding, care and treatment of developmental disorders.
A PRECIOUS
NEED
Human tissue obtained upon death from infants, children and young
adults, especially those afflicted with developmental disorders,
is the most precious resource needed to pursue the quest for medical
breakthroughs. It is in human tissues, particularly the brain,
that dysfunctions occur and manifest themselves as developmental
disorders. By examining these tissues, comparing the unaffected
with the affected, or by comparing different age groups, sexes,
etc., scientists may begin to unravel endless questions. And as
answers unfold, so will deeper understanding, offering hope to
the future lives of all afflicted children and their families.
THE
DONATION
Human tissue donation is a very precious gift. The decision, though,
may raise both personal and practical questions. In deciding,
the following points are helpful to know: The procedure to recover
tissue at time of death will not interfere with open casket viewing.
Since donation is accepted by most major religious organizations,
traditional funeral services may be planned. Also, there is no
financial burden placed on one's family as a result of this decision,
as the Brain and Tissue
Bank covers extra expenses related to the recovery of tissue.
The focus of this Bank is the research of childhood disorders;
therefore, infant, child and young adult donors are most sought.
However, anyone, regardless of age, is invited to donate, especially
family members of individuals with disorders. The Brain
and Tissue Bank distributes tissue exclusively for research
purposes. All donor information remains anonymous, and anyone
who registers holds the right to withdraw at any time.
TO
REGISTER
Return
the registration form to officially
notify the Bank of your intention to donate and to register name,
address and other vital information. In return, you will receive
a registration packet with further details and a donor card which
should be carried at all times.
Inform
family members and physicians of your decision to donate.
This is extremely important since the next of kin must give final
permission for tissue recovery, even if a donor has registered
their donation prior to death.
You
may call 1-800-59-BRAIN (1-800-592-7246) from any where in
the continental United States to discuss any and all concerns
relating to tissue donation. Your call will be received in strict
confidence.
TISSUE
RECOVERY
The next of kin or other authorized individual must give final
authority to the Brain
and Tissue Bank for tissue recovery. They should call 1-800-59-BRAIN
if death is imminent or as soon as possible after they have been
notified of the donor's death. Calls are taken 24 hours a day.
It is also very important that medical and funeral personnel are
aware of donor registration. The Brain
and Tissue Bank will respond with immediate and sensitive
attention to make every attempt within its means to insure successful
tissue recovery.
REGISTER
AS A DONOR NOW!
