Hawai‘i State Department of Health
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ABOUT US

The HBDP is a population based, multiple ascertainment source, active surveillance system serving all of Hawaii. The purpose of the HBDP is to be a reliable, valid and timely information source for ascertaining: The number of infants less than one year old with specific disabilities.

  • The number of pregnancies resulting in adverse reproductive outcomes.
  • The effectiveness of control programs aimed at reducing the number of birth defects and other adverse reproductive outcomes. Activities of the Hawaii Birth Defects Program
  • Monitor birth defects and other adverse pregnancy outcomes for trends and changes over time, including the identification of geographic and other clusters.
  • Distribute, present, and publish the information collected. List of Publications
  • Provide an information base for case control studies and for developing public awareness education programs about birth defects and their causes.
  • Act as a resource for the planning and development of appropriate statewide and community level services and preventive strategies.
  • All parents want healthy babies. However, some children are born with errors in their body chemistry that often show no outward symptoms. If these rare but serious conditions are not discovered early, poor physical and mental development, and even death, may occur. To make sure infants at risk are identified, the state of Hawaii requires screening of all newborns for certain genetic/metabolic disorders. If found and treated before symptoms appear, babies born with these disorders may lead a normal, healthy life.
CONFIDENTIALITY

Comprehensive control procedures have been established to protect the privacy of families, infants, physicians and hospitals. All identifying information is kept strictly confidential and all records are secured. All HBDP staff have also taken an oath of confidentiality.
Criteria for inclusion in the registry

In order for an infant/fetus to be included in the HBDP, the infant/fetus must meet the following criteria:
  • The infant/fetus must have one or more reportable diagnoses. The end of the pregnancy must occur in the state of Hawaii, but conception and/or any part of the pregnancy may occur out of the state.
  • The infant or fetus must have been noted to have had a problem during the antenatal period or within one year after the delivery.
  • However, definitive diagnosis may be made after the one-year cut-off period. All infants and fetuses are included regardless of pregnancy outcome (live birth, fetal demise, or medical termination).
HBDP ADVISORY COMMITTEE
A 20 member HBDP Advisory Committee (composed of representatives from the medical, university, community, public and private sector) offer scientific guidance and input into the Program.
ADMINISTRATION OF THE HBDP
The HBDP has contracts with the Hawaii Department of Health, Family Health Services Division, Children With Special Health Needs branch through contracts with the Cancer Research Center of Hawaii. The Research Corporation of the University of Hawaii carries out fiscal management and specified personnel related activities for the Program.
HBDP STAFF AND FUNDING
HBDP staff consists of three field and office based employees. Funding is secured through grants and contracts from both public and private sources locally and nationally.
DATA COLLECTION
Through on-site review of medical records at approximately 30 facilities, about 125 pieces of demographic and diagnostic information are collected on each baby that meets program eligibility criteria. The occurence of over 1000 different birth defects is monitored.
QUALITY CONTROL AND ASSURANCE
To ensure accuracy, strict quality control and assurance procedures have been established: 7% re-abstraction of all charts and 100% review by office and/or medical personnel of all abstracts for completeness and accuracy. Results to date: Analyses on the datga collected on babies from 1986 on show that cardiac/circulatory and limb/musculoskeletal are the leading birth defects for girls while genital/urinary anomalies head the list for boys. Detailed data for a number of different variables can be secured by contacting the HBDP office.

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(HBDP Main Page)

 

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Hawaii State Department of Health · 1250 Punchbowl Street · Honolulu, HI 96813