"A dedicated resource"

Science Article
October 16, 2003

Twenty-five-year veteran Pat Norkool loves analyzing data and contributing to the science of Wilms tumor

Pat Norkool, project coordinator for the National Wilms Tumor Study Data and Statistical Center, has helped to analyze 25 years of data on childhood kidney cancer. In addition to the depth of her knowledge, colleagues credit her warmth and willingness to serve as a resource for others. Photo by Todd McNaught

By ANNEMIEKE DeMAGGIO

Twenty-five years ago, Pat Norkool was only the third person to join the Wilms Tumor Study Group Data and Statistical Center in the Public Health Sciences Division. When she applied for the position of technical assistant with Dr. Norman Breslow, director of the study, he was not sure what to think of her credentials. In addition to a master's degree in English, her work experience included two years as an assistant manager at a dry cleaner, followed by two years of teaching English in Japan. Reluctantly, Breslow offered her the job, on the condition that she would promise to stay for two years.

Two weeks after Norkool started working for Breslow, she received an offer from the Seattle public school district for a teaching position, which would have paid quite a bit more. Yet Norkool chose to stick with the Wilms position-and has never looked back. Breslow, the principal investigator of the data and statistical center, has no regrets either.

"Pat has contributed greatly to the science of Wilms tumor," he said. "She has worked directly with medical investigators across the country and abroad to abstract, analyze and interpret the data in patient charts, and as a result, has been invited to participate as co-author in study publications. She has sought out funding opportunities that have helped to maintain the integrity and continuity of our staff."

Published statistician

The initial goal of the Wilms Tumor Study Group was to improve the survival of children with renal (kidney) tumors and to study the long-term outcome of children treated successfully. About 500 children in the United States are diagnosed with Wilms tumor each year. The cancer is usually diagnosed in children who are between 2 to 4 years.

Today, thanks to treatment recommendations from the Wilms Tumor Study Group, the survival rate exceeds 90 percent. But because the treatment includes radiation therapy and anti-cancer drugs, researchers have studied side effects that show up much later in life, such as secondary tumors and fertility problems, with the hope of minimizing such complications.

When Norkool came to the center, the study group prepared two statistical reports of their progress each year. It was a time when computer analysis was done via punch cards and card readers. Graphs were drawn by hand and tables were typed up manually. Because of this laborious process, it would take eight months to prepare the reports.

Now, Norkool said, tables that describe the survival rates for children who undergo different types of treatment are processed using a computer program. She and co-workers made an effort to become expert users of this program, which resulted in a much more extensive statistical analysis of the data.

"We even advised the physicians on how to use this data for scientific publications, and I have been included as an author on more then 20 papers," she said. "This was typical-from the beginning we have been treated as equals by the physicians and always received positive feedback and support."

Patient/family resource

Over the years, the group has published hundreds of papers. One of them, published three years ago, is especially close to Norkool's heart. It was the first research published on pregnancy outcome among Wilms tumor survivors.

"One burning issue among survivors and their families is the question about fertility," she said. "In the past, girls were told they would never be able to have children. We showed that they can have successful pregnancies, although they need to be monitored more carefully."

Besides her instrumental role in developing methods for data capture and recording, Norkool's colleagues describe her as a dedicated resource for the patients and their families. Over the years, the number of inquiries from parents with newly diagnosed children has increased as the population has become savvier about seeking out information for medical conditions.

"Her willingness to listen and to share what she knows has earned her much respect from the families who turn to her with questions after visiting the NWTS Web site," said Breslow, also a professor of biostatistics at the University of Washington. "She serves as a conduit for answers when the advice of an M.D. is required. As a mentor she has attracted a very loyal team of data managers, most of whom have worked together so closely for so long that they feel like family."

Helping people in need

Janice Takashima, a data coordinator with the Wilms project, who has worked with Norkool for all of her 25 years at the center, said that what makes Norkool a special colleague is her genuine concern for others.

"Pat gathers people around her, advocates for them, and they become her family," she said. "Her care for other people is shown through her listening and going to bat for people in need. This is not limited to the people involved in the study, but she will go out of her way to help anyone who gives time and energy to the center."

The Wilms Tumor Study Group recently completed its fifth and final clinical trial, but Norkool is not ready to start thinking about calling it quits just yet. The group will continue to study the late effects in adult survivors-and even the next generation.

[Dr. Annemieke DeMaggio is a postdoc in the Human Biology Division.]

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