Tissue Donation to Support Research
Procedure for Tissue Donation to
Support Research on Prader-Willi Syndrome
One of the ways researchers seek knowledge about the causes and possible treatments for
Prader-Willi syndrome is through study of bodily tissue from individuals with the
syndrome. Brain tissue, in particular, is critical to researchers who are trying to learn
why PWS causes dysfunction in the hypothalamus portion of the brain. While samples of some
bodily tissues can easily be obtained at the time of a scheduled surgery, brain tissue is
only available after an individual's death and must be obtained and preserved
within hours of death to be useful to researchers. This requires planning
and a prompt decision from the individual's family as well as a major coordination of
Some families will find this difficult to contemplate, in the same way that some feel
they could not consider donating organs for transplant when a loved one dies. However,
other families find that such a donation gives greater meaning and purpose to the life of
their loved one with PWS. When one such family tried to arrange a tissue donation at the
time of their child's death, it became clear to PWS researchers and the many others who
became involved that a procedure was needed to simplify the process and reduce the burden
on a grieving family.
To facilitate tissue donation for PWS research purposes, the PWSA
Scientific Advisory Board has established a procedure in conjunction
with the Brain and Tissue Banks for
Developmental Disorders, a center that are funded by the National
Institutes of Child Health and Human Development. These are designed specifically to register donors and to collect, preserve, and
disseminate tissue for research.
click here to read a story from one family.
The Procedure in Brief
They will pre-register individuals with PWS whose families
would consider making tissue donations. In addition to brain tissue, other bodily tissue
can be helpful to PWS researchers and could be obtained, with the family's or individual's
permission, at the time of a planned surgery or biopsy for medical reasons.
The banks have 24-hour, phone numbers that families can use to get
information and counseling about tissue donation and to arrange for tissue collection in
advance of a medical procedure or in the event of death of the registered family member.
Even if a family has not pre-registered, an immediate call to the nearest tissue bank
may make possible a tissue donation in the event of sudden death of the loved one with
Tissue that is collected from individuals with Prader-Willi syndrome is catalogued and
stored at the banks for potential research projects, and PWSA's Scientific Advisory Board
will make recommendations regarding the release of PWS tissue for specific research
Tissue donation and the death of a loved one are not easy things to consider. Many
questions may come to mind, most of which can be answered by a phone call to the Brain and
Tissue Bank counselors. Families should be assured that, given the sensitive nature of
their task, the Brain and Tissue Banks have set as their highest priority "the
emotional and physical well-being of the families and individuals" with whom they
interact. Families who call for information are not pressured to register. Time is taken
to inform everyone involved of the purpose and process of tissue donation. Donor
information is kept in strictest confidence. And registration is not an absolute
commitment to make the donation; only the next of kin at the time of the person's death
can give final permission for tissue retrieval.
Key Telephone Numbers
To obtain information about tissue donation and advance registration, or to report the
death or impending death of a family member with PWS, call the
University of Maryland
655 West Baltimore Street, BRB 13-013
Baltimore, MD 21201
Project Coordinator Melissa Davis
1-800-847-1539 or 410-706-1755
PWSA (USA) officials also can discuss with families the decision to donate. Contact the
national office at 1-800-926-4797.