Hawai'i Tumor Registry To Launch "Sharing Ohana" Study To Learn How Lifestyle And Genes Influence Development And Survival Of Cancer

Main Category: Cancer / Oncology
Also Included In: Genetics
Article Date: 08 Jun 2009 - 4:00 PDT

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The Hawai'i Tumor Registry (HTR), jointly operated by the Cancer Research Center of Hawai'i (CRCH) and the Hawai'i State Department of Health (DOH), will officially launch a study titled, "Sharing Ohana." The Sharing Ohana study is under the direction of Dr. Marc Goodman, Professor at the CRCH and Director of the HTR.  The study will gather data on lifestyle and genetics from 1,500 individuals who have recently been diagnosed with cancer in the State of Hawai'i. The collection of cancer risk information will enhance the ability to monitor trends and to determine ways in which these risk factors influence cancer rates in the state. This project will complement existing efforts by the DOH for statewide comprehensive cancer control in Hawai'i.

Participants in this study will be asked to complete a short questionnaire about their background and health and will also be asked to contribute some buccal cells from their mouths. These cells will be stored for use in future research studies. Information collected from the questionnaires and cells will allow researchers from the CRCH to study how lifestyle, environment, personal characteristics, and other factors are related to cancer development and survival. "Results from this project should greatly benefit our fight against cancer," Goodman says. "Sharing Ohana data will help us monitor our current cancer control efforts and to develop strategies for identifying members of the community most in need of education and services."

Individuals will be contacted through the mail about joining the Sharing Ohana study. Participation in the study is entirely voluntary and individuals who initially decide to enroll may withdraw at any time. Personal Information about the people who choose to join the Sharing Ohana study will be kept highly confidential. Multiple safeguards have been implemented to maintain the confidentiality of the research records. Any publications or presentations about this study will not identify individuals. Health-related data in the HTR is legally protected under Hawai'i law and cannot be accessed, even by court subpoena.

The Hawai'i Tumor Registry is one of the oldest cancer registries in the nation and was established in 1960 by the Hawai'i Medical Association (HMA), Hawai'i State Department of Health (DOH), and the American Cancer Society (ACS), Hawaii Pacific Division. The HTR is formally legalized by the Hawai'i State Legislature to collect data on cancer and closely related conditions in the State. Since 1973, HTR has received its primary financial support from the National Cancer Institute (NCI) and is a member of the Surveillance, Epidemiology, and End Results (NCI/SEER) Program with additional funding from the DOH.

In its years of operation, HTR has been the sole and authoritative source of cancer data and information for residents of Hawai'i. Cancer data collected by the HTR is used to develop health education, prevention, and screening programs, and it is also used by local, national and international researchers to study the causes and treatment of diseases and how they affect the people of Hawai'i. These efforts have shown a positive outcome in recent years as deaths from cancer have begun to decline. Of significance is that survival from cancer in Hawai'i is among the best in the world. "Sharing Ohana will provide a unique resource for our community and will keep us at the forefront of cancer research both nationally and globally," says Goodman.

The HTR database contains more Native Hawaiian cases than any other registry nationwide, as well as sizable numbers of Caucasian, Chinese, Filipino, Japanese and Pacific Islander cases, and other ethnic groups. This racially diverse database has been invaluable in demonstrating ethnic variations in cancer incidence and survival. As one of the 18 NCI/SEER regions nationwide, the HTR provides detailed information on more than 6,660 new Hawai'i cases of cancer diagnosed annually, while also collecting annual follow-up data on all diagnosed Hawai'i patients until their deaths. Currently, the HTR database contains more than 179,757 cases diagnosed between 1960 and 2006.

Source
The Cancer Research Center of Hawai'i