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Release: Jan. 10, 2002

Impact of Huntington's disease on family members to be studied by UI nursing researchers

IOWA CITY, Iowa -- Since 1993 it has been possible to identify a genetic marker that predicts Huntington's disease. Individuals can now be identified as carriers of the marker before they show symptoms of the disease. Researchers at the University of Iowa College of Nursing have received funding to study what impact pre-symptomatic diagnosis of Huntington's has on the family of those diagnosed.

Janet K. Williams, Ph.D., UI associate professor of nursing, has received nearly $1.5 million from the National Institute of Nursing Research to study the effects this identification on a family member's own emotional and functional health status, perceptions of health problems, and resources and strategies for managing these problems. In doing so, the aim is to document family members' needs so they can be equipped to assist a loved one before he or she becomes ill.

As researchers learn more about genetics and are able to identify genetic markers for additional diseases, more people deal with the possibility of knowing they are predisposed to specific illnesses. When this happens, parents, siblings, children and spouses have a role.

"We know that family members want to help their relative remain healthy, yet they do not always know how to do that. Furthermore, some family members have concerns of their own regarding how to tell others in the family about the genetic information," Williams said. "This four-year grant will help to identify ways that family members try to solve health problems and how health care providers, including nurses, can help them anticipate and manage problems that are likely to occur."

Study participants will be identified through the recently funded UI Health Care study known as PREDICT-HD (Neurobiological Predictors of Huntington's Disease) that is focusing on possible pre-symptomatic treatments for people who carry the genetic markers for Huntington's disease. PREDICT-HD is being led by Jane Paulsen, Ph.D., UI professor of psychiatry, neurology, and psychology.

Williams is the past president of the International Society of Nurses in Genetics and is a consultant on numerous national projects to promote education of nurses regarding genetics. Williams also conducts research on education of nurses on genetic topics, and she has collaborated on the development of a monograph to educate school nurses on issues for children with specific genetic and growth disorders.