Hawai‘i State Department of Health

ETIOLOGY OF HEARING LOSS PROJECT

This research project is a multi-state collaborative study involving Hawai`i, Rhode Island, and Utah, with funding from the Centers for Disease Control and Prevention

The purposes of this study is to:

determine the etiology of congenital hearing loss based on children identified through statewide Newborn Hearing Screening (NBHS) programs.
perform a genetic evaluation of children with unilateral or bilateral hearing loss (see eligibility criteria below).
establish a model for improving follow-up genetic services for infants with hearing loss identified through statewide NBHS programs.

All children born on or after January 1, 2001 with a positive NBHS and a diagnosis of permanent hearing loss, and all children born on or after January 1, 1998 with a negative NBHS and a diagnosis of permanent hearing loss made before their third birthday will be invited to participate in this project. Participation in the study is voluntary, and informed consent will be obtained. There is no cost to families for participation in the study.

For families who choose to participate, their child will be:

evaluated and counseled by a medical geneticist and genetic counselor.
offered genetic testing

The following are materials about the study. Click on the title to download the document in pdf format.

Parent Brochure

Health Care Providers Fact Sheet
Consent Form

The information provided in this material (e.g., fact sheet, monograph, bibliography, reference list, slide show, presentation, etc.) was supported by Cooperative Agreement Number (see below) from the Centers for Disease Control and Prevention (CDC). The contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC.

00076:
Rhode Island

01048:
Hawai`i and Utah