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HAWAI`I BIRTH DEFECTS PROGRAM FREQUENTLY ASKED QUESTION
What exactly is a birth defect and how many babies are born with one each year in Hawaii?
How many birth defects occur in Hawaii and what is the impact on the state?
How long has the Hawaii Birth Defects Program been in existence, and what is the scope of the Program?
What is the purpose of the HBDP?
What are the major activities of the HBDP?
What “direct delivery of services” does the HBDP provide to affected babies and their families?
How does the HBDP obtain its data and from where?
How specific are the HBDP data, and what diagnoses and variables does the Program collect data on?
What kinds of diagnoses does the HBDP pick up, and what kinds are not?
What are the criteria for a baby to be included in the HBDP database?
What is the statutory authority that allows the HBDP to collect the data that it does?
Has the HBDP instituted any quality control/assurance measures to ensure the best data possible?
How confidential is the information in the HBDP database?
What data and information are available on the HBDP website?
What is the difference between a “raw number” and a “rate per 10,000 births” as seen in the HBDP Data Book?
Are the data provided by the HBDP free, and if not, how much does it cost to secure?
How are the collected data used by the HBDP?
Is the HBDP a state agency or part of the university and how is it administered?
How is the HBDP associated with the March of Dimes Birth Defects Foundation or other non-profit groups?
How is the HBDP funded and is it beholden to any funder?
How many staff does the HBDP have and are there any job openings?
Can I get a certified copy of my birth certificate from the HBDP?
How can I contact/find the HBDP?
What exactly is a birth defect and how many babies are born with one each year in Hawaii?
A birth defect is defined as any structural, functional, or biochemical abnormality in development that originates before birth and is detectable at birth or shortly thereafter. These congenital abnormalities may be genetic, caused by environmental hazards or adverse life style effects, but often are of unknown origin.
How many birth defects occur in Hawaii and what is the impact on the state?
Birth defects are the number one cause of infant mortality in Hawaii with over 400 fetal deaths each year. About 20% of all pregnancies result in a spontaneous miscarriage and approximately 1,035 (5.2%) of all babies are born each year with some recognizable abnormality. Approximately 30% of all admissions to pediatric hospitals are caused by problems directly associated with birth defects.
How long has the Hawaii Birth Defects Program been in existence, and what is the scope of the Program?
The Hawaii Birth Defects Program (HBDP) was established in August 1988 in response to a community-based Invitational Roundtable recommendation to Governor Waihee to establish an active Birth Defects and Adverse Reproductive Outcomes Surveillance System for the State of Hawaii. The HBDP is a population based, multiple ascertainment source, active surveillance system serving all of Hawaii nei.
What is the purpose of the HBDP?
The purpose of the HBDP is to be a reliable, valid, and timely information source for ascertaining:
* the number of infants and young children (less than one year old) with specific disabilities;
* the number of pregnancies resulting in adverse reproductive outcomes; and
* the effectiveness of control programs aimed at reducing the number of birth defects and other adverse reproductive outcomes in Hawaii.
What are the major activities of the HBDP?
The HBDP monitors birth defects and other adverse pregnancy outcomes for trends and changes over time, including the identification of geographic and other clusters. The program also provides an information base for participation in international, national and local research studies, and for developing public awareness education programs about birth defects and their causes. And lastly, the HBDP acts as a resource for the planning and development of appropriate statewide and community level services and preventive strategies.
What “direct delivery of services” does the HBDP provide to affected babies and their families?
The major role of the HBDP is one of birth defect case identification, collection of important demographic and diagnostic information, dissemination of this de-identified data in a variety of formats, and participation in data research projects. The mission of the HBDP and its small staff size do not allow it to provide direct delivery of service to families, except for referral to other agencies whose role it is to provide that direct outreach.
How does the HBDP obtain its data and from where?
Thirty four health care facilities (hospitals, medical centers, fetal diagnostic centers, genetic counseling centers, laboratories, prenatal centers, etc.) statewide participate collaboratively with the HBDP to ensure as complete as possible abstraction of information on babies diagnosed by a physician with a birth defect. The HBDP carries out “active surveillance” where HBDP staff review relevant medical records at each facility, as opposed to “passive surveillance” system where a program has to wait for facilities to get around to sending in the needed information.
How specific are the HBDP data, and what diagnoses and variables does the Program collect data on?
About 125 pieces of demographic and diagnostic information are collected on each baby and its biological parents that meet Program eligibility criteria. The HBDP monitors the occurrence of 1,154 diagnoses as recommended by the Centers for Disease Control and Prevention (CDC). Cases are identified by HBDP staff who review all appropriate medical records (often at multiple sites), abstract the needed information, enter it on the computer, and conduct edit and quality control measures. The data are then analyzed, published in a variety of formats and disseminated to interested parties (physicians, hospitals, researchers, students, state policy makers, community groups, etc.).
What kinds of diagnoses does the HBDP pick up, and what kinds are not?
The HBDP picks up specified CDC recommended diagnoses relating to the brain and nervous system, the eye, ear, face and neck, cardiac and circulatory, respiratory, orofacial and gastrointestinal, genital and urinary, limb and musculoskeletal, skin and integument systems. The Program also collects data on specific chromosomal and other syndromes, neoplasms (pediatric cancers), congenital infections, and maternal substance abuse. Other areas that have their own surveillance systems (cystic fibrosis, sickle cell anemia, pediatric AIDS, developmental disabilities, autism, rarer syndromes, etc.) are not collected by the HBDP.
What are the criteria for a baby to be included in the HBDP database?
The end of the pregnancy must occur in the State, but conception and/or any part of the pregnancy can occur outside the State. The infant/fetus must have one or more reportable diagnoses, and the infant/fetus must have been noted to have had a problem during the antenatal period or within one year after delivery. Prenatally diagnosed fetuses and spontaneous miscarriages are also counted if they occur in the state, along with in-state births and infant deaths. Since data are collected on moderate to severe anomalies, information is abstracted on babies up to one year of age, except for Fetal Alcohol Syndrome (FAS) which may not manifest itself until after one year of age. Since the effects of FAS definitely occur before birth, and because it is so poorly diagnosed by physicians, this one diagnosis is picked up at any age it is found.
What is the statutory authority that allows the HBDP to collect the data that it does?
From August 15, 1988 until June 30, 2002, Hawaii Revised Statutes (HRS) , Sections §321-31 and §338-2 provided the Statutory Authority for the Department of Health to administer a birth defects monitoring program and collect statistical data on birth defects, with additional legislative authority provided through HRS §324-1 and §324-2 (1990 Amendments). Act 252 (2002), [SB2763, SD2, HD2, CD1], Chapter 325, Part XXXIV, Sections §321-421 through §321-426, and Part V, Sections §324-41 through §324-44, signed by Governor Cayetano on July 1, 2002, further refined Department of Health authority, HBDP activities, and funding sources.
Has the HBDP instituted any quality control/assurance measures to ensure the best data possible?
To ensure data accuracy, completeness and timeliness, strict quality control and assurance procedures have been established by the HBDP as follows: 7% re-abstraction of all charts by a separate Data Collection Specialist, and 100% review of all abstracts by a contracted Data Consultant or physician (certified dysmorphologist).
How confidential is the information in the HBDP database?
Comprehensive control procedures have been established to protect the privacy o infants, families, physicians, and hospitals. All identifying information is kept safe and strictly confidential and the HBDP is in compliance with all hospital Institutional Review Board (IRB) rules as well as the Health Insurance Portability and Accountability Act of 1996 (HIPAA) regulations passed to date. In addition, all HBDP staff have taken an oath of confidentiality, while all data reported to the community are done so in an aggregate de-identified format only.
What data and information are available on the HBDP website?
Currently, the HBDP website contains a Program description, listing of scientific publications by staff appearing in peer-review Journals, other important Program documents, and a copy of the most recent 133 page data report entitled “Hawaii Birth Defects Program 1986-2002 Statewide Data Surveillance Report Number 11, January 1, 1986 through December 31, 2002, December 2003".
What is the difference between a “raw number” and a “rate per 10,000 births” as seen in the HBDP Data Book?
Raw numbers have limited value unless they can be compared to other data for statistical purposes. Therefore, to compensate for variations in population, a rate per 10,000 births is used to compensate for these difference in population size. For example, when you look at raw numbers for birth defects by county, it looks like babies born on Oahu have a 75% higher chance of having a birth defect. But when you compensate for the differences in total island population size, you bring all data to the same level to review for differences. A rate is calculated by dividing the numerator (# of birth defects on a specific island) by the denominator (total number of births on that particular island). Rates per 10,000 births should always be used when analyzing data.
Are the data provided by the HBDP free, and if not, how much does it cost to secure?
Data and information from the HBDP are always free, and requests are usually filled within 24-48 hours. The HBDP Administrator works closely with the data requestor to ensure a workable plan and computer run. The HBDP takes special time working with students (high school, college, medical/dental/nursing/etc.) by guiding them on how best to use and analyze data, and where to find additional resources.
How are the collected data used by the HBDP?
Data are meant to be shared with as many people as possible in effort to reduce/eliminate birth defects. The HBDP puts out an extensive data report each year looking at about 100 diagnoses by over 20 variables (parents’ age, ethnicity, etc.). De-identified data and information are shared with researchers, physicians and students interested in a particular area, and requests on information about birth defects are shared with legislators and other policy makers at the state and local levels. The HBDP Administrator disseminates data, gives presentations, prepares reports and brochures, and co-authors articles for publication in peer-review Journals. The program also participates in local cluster investigations, national (Gulf War Syndrome, National Birth Defects Prevention Network) multi-state projects, and multi-country international (World Health Organization) investigations.
Is the HBDP a state agency or part of the university and how is it administered?
The HBDP is administered by the Hawaii State Department of Health, Family Health Services Division, Children With Special Health Needs Branch. In the past, the DOH contracted with the Research Corporation of the University of Hawaii to carry out fiscal management and specified personnel related activities, giving the HBDP a unique tie to the University as well as the State.
How is the HBDP associated with the March of Dimes Birth Defects Foundation or other non-profit groups?
While the HBDP is a state program, the HBDP Administrator represents the Program at the local level by attending meetings, serving as a conference speaker, and providing data to a variety of community organizations such as the March of Dimes, Child Death Review Council, Hawaii Perinatal Consortium Data Committee, Fetal Alcohol Syndrome Disorder Committee, Hawaii Substance Abuse During Pregnancy Coalition, etc. At the national level, the HBDP Administrator served on the Executive Committee and as the elected 2004 Member-At-Large for the professional association National Birth Defects Prevention Network (NBDPN). Committee work on the NBDPN also includes Surveillance Guidelines, Data and Research, Membership and Elections as well as several working committees and developing poster sessions and presentations.
How is the HBDP funded and is it beholden to any funder?
Since 1988, public and private sector contract and grant funding has been secured from a variety of sources including the State of Hawaii Department of Health, Centers for Disease Control and Prevention, Birth Defects Special Fund, Maternal and Child Health Block Grant, Ronald McDonald Childrens’ Charities, DOH Neighbor Island Project, State Systems Development Initiative Program, Department of the Navy Health Research Center Gulf War Syndrome Project, George F. Straub Trust, Queen Emma Foundation, Pacific Southwest Regional Genetics Network, Kamehameha Schools/Bishop Estate, and the Times Community Action Partnership Program. The HBDP is beholden to no one, with all data always being reported out accurately.
How many staff does the HBDP have and are there any job openings?
An all volunteer twenty member HBDP Advisory Committee (composed of professionals from the medical, university, community, public and private sector) offer scientific guidance and input to the Program. Paid HBDP staff consist of one Administrator, one computer Database Associate, two Data Collection Specialist, and one part-time Data Consultant. University of Hawaii Student Assistants and unpaid Community Service Workers also contribute time and effort to the Program. At present, no open unfilled positions exist at the HBDP.
Can I get a certified copy of my birth certificate from the HBDP?
This remains probably the frequently asked question of the Program. Copies of Hawaii Birth Certificates cannot be secured from the HBDP, but rather must be gotten from the Department of Health, Office of Health Status Monitoring, Vital Records Section, Certified Copies, 1250 Punchbowl Street, First Floor, Honolulu, HI 96813, 808-586-4539.
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(HBDP Main Page)
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