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Vol. LVIII, No. 10
May 19, 2006

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NIEHS Employees Support Polymorphism Registry

Employee Veronica Godfrey, who says she is doesn’t like needles, braved the phlebotomist to participate in the NIEHS Environmental Polymorphism Registry. Joan Jacobs of Constella Health Services was one of five phlebotomists collecting blood samples at the NIEHS recruitment.  
Some 420 people showed up in just 1 week, each leaving behind a few teaspoons of blood for the NIEHS Environmental Polymorphism Registry and tucking a crisp $20 bill into their pockets as they left.

But it was not the money alone that lured NIEHS staff in for the donation. Many employees said they felt it was their responsibility to donate to biomedical research, and some recruited family members to register as well.

Employee Judy Hanson and her 25-year-old son Tony Belch enrolled. He said he participated because the research could lead to breakthroughs that could help millions of people, even save lives somewhere down the line. Hanson said it is exciting to be part of DNA research and thinks it is a great opportunity to help scientists better understand the disease process.

Heather Vahdat, assistant manager of the clinical research program at Integrated Laboratory Systems, which will handle the recruitment, blood sample collection and DNA isolation, said she was impressed with NIEHS participation.

In Rodbell Auditorium, people at five recruiting stations performed intake functions. They explained the study, gathered data and provided and administered consent forms.

  Heather Vahdat, the study manager for the NIEHS registry
When it's all said and done, the registry will have about 20,000 samples that will provide DNA and data to researchers looking for genetic clues to disease. The registry is being created in collaboration with University of North Carolina investigator Paul Watkins, director of the UNC General Clinical Research Center.

Participants were recruited at UNC clinics and at corporations in the Research Triangle area and outlying counties. Patricia Chulada, program administrator in the NIEHS clinical program, said enrollment will continue for about 5 years, or until the 20,000 samples are collected.

According to the consent information, each donor's personal information — name, gender, birthday, address, telephone number and email address — will be entered into the registry's database. DNA will be extracted from the blood sample, processed anonymously, encoded with a secret identification number and placed in the DNA bank.

The DNA in the registry will be archived for up to 25 years. During that time, NIEHS and UNC researchers will use the DNA to look for genetic differences that might be associated with common health conditions like diabetes, heart disease and cancer. Plans are under way to allow Duke researchers access to the DNA as well. Researchers who find a genetic difference of interest may investigate further by asking those donors to participate in a follow-up study, Chulada said.

Signing the consent form for the registry does not mean a donor will automatically be included in follow-up studies. These studies will require several different levels of review before the samples are decoded and donors are called back. Nobody who participates in the registry will be identified in any report or publication resulting from use of the registry, the consent form said.

To protect the privacy of donors, study officials obtained a Certificate of Confidentiality from NIH, which is valid for the duration of the study. The certificate means researchers cannot be forced to disclose information that may identify anyone in the study.

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