Tissue Donation to Support Research
on Prader-Willi Syndrome

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 effort.

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 PWS.

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 proposals.

Some Reassurances

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 following:

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
Fax: 410-706-2128
E-mail: btbumab@umaryland.edu
Family Website: www.btbankfamily.org
Researchers Website: www.btbank.org 

PWSA (USA) officials also can discuss with families the decision to donate. Contact the national office at 1-800-926-4797. 

Updated: 02/09/2012