PROJECTS

The Genetics Program administers and participates in local, regional, and national projects. For further information about each of our past and current projects, please click on the name of the project below.

Western States Genetic Services Collaborative Project (ON GOING)

This is a HRSA funded multi-state project that seeks to coordinate and increase access to genetic services among the participating states and territory. The participating states and territory are: Alaska, California, Guam, Hawaii, Idaho, Nevada, Oregon, and Washington.

Click here for more information.

Baby’s First Test Challenge Grant Project  (COMPLETED)

In 2011, the Genetic Alliance announced that their “Challenge Grants” would focus on the development of the www.BabysFirstTest.org website, a clearinghouse of newborn screening information. The Hawaii Department of Health Genetics Program was awarded a grant to elicit information about online health seeking behavior, including search habits, website design preferences, desire for particular pieces of health information, and motivations for online health information seeking. More than 800 attendees at the 2011 Hawaii Baby Expo or WIC Clinics were surveyed, using ipad survey applications or paper surveys. The study accessed an ethnically diverse population including Asians and Native Hawaiians / Pacific Islanders, thus providing results that can potentially inform the development of information or websites targeted toward these populations. Given that the American public has identified the Internet as a valid and readily accessible tool for accessing health information, our goal was to identify common themes related to online health information seeking behavior that could be used to tailor the NBS Clearinghouse and the BabysFirstTest.org website in a way that makes it compelling, relevant, reliable, and useful. Results are available in the “2011 Newborn Screening Clearinghouse Challenge Grant Report” developed by the Hawaii Department of Health Genetics Program.

 MD STARnet Project (COMPLETED)

The Hawaii MD STARnet project is part of a multi-state endeavor funded by the CDC to further define the prevalence of Duchenne and Becker Muscular Dystrophy, and the factors affecting disease progression.

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Newborn Screening: Financial, Ethical, Legal, and Social Issues Project (NBS FELSI) (COMPLETED)

This is a HRSA multi-state collaborative project, led by the Hawaii Department of Health, to identify parental attitudes after receiving false positive newborn screening results. This information will be utilized to develop strategies and materials for future parents receiving false positive newborn screening results. The materials will be disseminated to state collaborators and nationwide to newborn screening programs.

Sickle Cell Disease Project (COMPLETED)

This project seeks to develop a follow-up and educational program to ensure that newborns and families with sickle cell disease or trait receive comprehensive care.

Etiology of Hearing Loss Project (COMPLETED)

This is a CDC multi-state collaborative project to:  (1) determine the etiology of congenital hearing loss based on children identified through statewide Newborn Hearing Screening (NBHS) programs; (2) perform a genetic evaluation of children with unilateral or bilateral hearing loss; and (3) establish a model for improving follow-up genetic services for infants with hearing loss identified through statewide NBHS programs.

Hawaii Genetics Awareness, Implementation, and Data (GENEAID) Project  (COMPLETED)

This is a HRSA project to develop activities to increase statewide genetic awareness in all communities, implement genetics into public health programs, and integrate the state newborn screening data systems.

Expanded Newborn Screening Using Tandem Mass Spectrometry: Financial, Ethical, Legal, and Social Issues Project (COMPLETED)

This is a HRSA multi-state collaborative project, led by the Hawaii Department of Health, to obtain research data, identify strategies, and develop materials for addressing the financial, ethical, legal, and social issues (FELSI) surrounding the use of MS/MS for neonatal metabolic screening of culturally and ethnically diverse populations.

Genetics Assessment and Planning Project (COMPLETED)

This project updates and expands our 1993 state genetics plan by including community-based needs assessments.

 

Please note: Some of the information in the project pages contains links to information in PDF files. You will need the free Adobe Acrobat Reader (available at www.adobe.com) to read the PDF file.