MONITORING, SERVICES AND PREVENTION OF BIRTH DEFECTS IN MINNESOTA: THE MINNESOTA BIRTH DEFECTS MONITORING AND ANALYSIS PROGRAM Barbara Frohnert, MPH Epidemiologist Kristin Peterson Oehlke, MS, CGC Genetic Counselor and Supervisor Jan Sieger RN MPH FNP Birth Defects Specialist
GOALS Surveillance: Describe the history of birth defects surveillance in Minnesota, Describe the specific birth defects included in the Birth Defects Information System, Review progress to statewide surveillance Present current birth defects prevalence data, Describe the collaboration with the Newborn Screening Program to implement screening for Critical Congenital Heart Defects Research Opportunities for future research Services Highlight the partnership with local public health agencies to coordinate care for this population, Prevention Provide a preview of the primary and secondary prevention efforts that aim to minimize the incidence and impact of birth defects in Minnesota
PROGRAM HISTORY
PROGRAM BACKGROUND 3-5% of live births have major structural birth defects. 2,100-3,500 Minnesota children are born each year with a major birth defect. Birth defects are the leading cause of death for children <1 yr old Causes of Birth Defects: 20% genetics 10% environmental factors 70% unknown
MINNESOTA BIRTH DEFECTS SURVEILLANCE 1996: work toward birth defects surveillance began 1997 report to the state legislature 2002: CDC planning grant received to fund surveillance work on birth defects. 2004: Minnesota State Legislature created birth defects program 2005: Surveillance began in Hennepin & Ramsey using CDC implementation surveillance grants 2010: Minnesota State Legislature provided funding for birth defects program
MDH BIRTH DEFECTS PROGRAM GOALS Monitor trends of birth defects Accurately target intervention, prevention, and services for communities, patients and their families Inform health professionals of the risks for birth defects Participate in scientific investigation of potential causes and prevention of birth defects
STAFFING Supervisor Genetic Counselor Surveillance 2 epidemiologists 4 Abstractors Information Tech Specialist (MEDSS) 3 Contracted MD Consultants Services 2 Nurse Practitioners Operations Coordinator Prevention Prevention and Education Specialist Women s Health Consultant
SURVEILLANCE
PROCESS Surveillance covers 45 selected major structural defects 46 th condition will be added in 2013 Conditions must be diagnosed by 1 year of age Most of these conditions are diagnosed at birth Case criteria follows the guidelines established by the National Birth Defects Prevention Network (NBDPN), the national network of state and population-based birth defects programs Families can choose to have their identifying information removed (Opt-out) Families who do not opt out are referred to their local public health agency for services and referrals.
IDENTIFYING BABIES WITH BIRTH DEFECTS Most cases are identified from medical records at hospitals and NICUs Additional cases are identified on check boxes on birth certificates New birth certificates have fewer congenital anomalies listed Limited to those that are easily identifiable at birth Collecting accurate data should be easier and more complete Other sources include: Medicaid claims, Newborn Hearing Follow-up Program, outpatient clinics
MINNESOTA MONITORS 46 CONDITIONS: CARDIAC Aortic Valve Stenosis Atrial Septal Defect (ASD) (PFO) Coarctation of the Aorta Common Truncus Ebstein's Anomaly Endocardial Cushion Defect (AV Canal) Hypoplastic Left Heart Syndrome Patent Ductus Arteriosus (PDA) Pulmonary Valve Atresia and Stenosis Single Ventricle Tetralogy of Fallot Transposition of the Great Arteries Tricuspid Valve Atresia and Stenosis Ventricular Septal Defect (VSD) Total Anomalous Pulmonary Venous Return (TAPVR) NEW for 2013
MINNESOTA MONITORS 46 CONDITIONS: CENTRAL NERVOUS SYSTEM, CHROMOSOME, EAR, EYE Central Nervous System Anencephalus Encephalocele Hydrocephalus Microcephalus Spina Bifida Chromosome Down Syndrome Trisomy 13 Trisomy 18 Eye Aniridia Anophthalmia and Microphthalmia Congenital Cataract Ear Anotia / Microtia
MINNESOTA MONITORS 46 CONDITIONS: GASTROINTESTINAL, GENITOURINARY Gastrointestinal Biliary Atresia Esophaegeal Atresia Hirschsprung's Disease Pyloric Stenosis Rectal and Large Intestinal Atresia / Stenosis Genitourinary Bladder Exstrophy Hypospadias and Epispadias Obstructive Genitourinary Defect Renal Agenesis / Hypoplasia
MINNESOTA MONITORS 46 CONDITIONS: MUSCULAR SKELETAL, ORAL, OTHER Muscular Skeletal Congenital Hip Dislocation Diaphragmatic Hernia Gastroschisis Omphalocele Reduction Deformity: Lower Limbs Reduction Deformity: Upper Limbs Oral Choanal Atresia Cleft Lip and Palate Cleft Palate without Cleft Lip Other Health Conditions Fetal Alcohol Syndrome (FAS)
Defect MOST COMMON BIRTH DEFECTS COUNTS AND PREVALENCE RATES FOR HENNEPIN AND RAMSEY COUNTIES, RANKED BY FREQUENCY (2006 2009 DATA, TOTAL LIVE BIRTHS = 96,859) N Rate per 10,000 live births Total Defects 2590 267.40 Body System Category Atrial septal defect Cardiovascular 444 45.84 Ventricular septal defect Cardiovascular 324 33.45 Hypospadias and Epispadias Genitourinary 248 25.60 Obstructive genitourinary defect Genitourinary 196 20.24 Patent ductus arteriosus Cardiovascular 171 17.65 Pyloric stenosis Gastrointestinal 170 17.55 Down Syndrome Chromosomal 143 14.76 Cleft lip with and without cleft palate Orofacial 97 10.01 Pulmonary valve atresia and stenosis Cardiovascular 56 5.78 Cleft palate without cleft lip Orofacial 55 5.68
OTHER USES OF DATA Planning for implementation of newborn Critical Congenital Heart Disease screening using pulse oximitry Environmental Public Health Tracking program: Birth Defects Data & Measures report https://apps.health.state.mn.us/mndata/birth_metadata
ESTIMATED NUMBER OF CASES OF CCHD IN MINNESOTA Critical Congenital Heart Defects Estimated Expected Annual Case Count* Estimated from all cases identified in BDIS, regardless of maternal residence 2006-2009 Estimated using rates from Hennepin/Ramsey Counties only, 2006-2009 Hypoplastic Left Heart Syndrome 16 13 Pulmonary Atresia 41 40 Tetralogy of Fallot 30 34 Total Anomalous Pulmonary Venous Return N/A N/A Transposition of the Great Arteries 34 32 Tricuspid Valve Atresia & Stenosis 5 5 Truncus Arteriosus 5 4 Total CCHD, excluding TAPVR 131 128 * One child may have more than one of these defects and may be counted twice. Total number of children with CCHD, excluding TAPVR 114 116 Data from MN BDIS
RESEARCH
RESEARCH GOALS AND OBJECTIVES 2012-2014 Drafted in spring 2012 Overarching Goal: By the end of 2014, establish a foundation for including Minnesota birth defects surveillance data in ongoing analysis and research on birth defects.
RESEARCH GOAL #1 Establish a multidisciplinary birth defects research network in Minnesota Objective 1a: Establish a birth defects research network within MDH by the end of 2012 Newborn Screening program Environmental Public Health Tracking Objective 1b: Establish a statewide multidisciplinary birth defects research network in Minnesota by the end of 2014 If you are interested in getting involved in the planning, please let us know today.
RESEARCH GOAL #2 Establish an infrastructure and framework to facilitate the use of Minnesota birth defects data in research. Objective 2a: Establish a process for researchers to apply to use birth defects data by June 30, 2013 Objective 2b: Establish a process for reviewing and approving or declining research projects that seek to use birth defects data by June 30, 2013 Objective 2c: Establish a process for estimating costs associated with research and a mechanism to recoup these costs by the end of 2013
MINNESOTA MONITORS 46 CONDITIONS: GASTROINTESTINAL, GENITOURINARY Gastrointestinal Biliary Atresia Esophaegeal Atresia Hirschsprung's Disease Pyloric Stenosis Rectal and Large Intestinal Atresia / Stenosis Genitourinary Bladder Exstrophy Hypospadias and Epispadias Obstructive Genitourinary Defect Renal Agenesis / Hypoplasia
MINNESOTA MONITORS 46 CONDITIONS: MUSCULAR SKELETAL, ORAL, OTHER Muscular Skeletal Congenital Hip Dislocation Diaphragmatic Hernia Gastroschisis Omphalocele Reduction Deformity: Lower Limbs Reduction Deformity: Upper Limbs Oral Choanal Atresia Cleft Lip and Palate Cleft Palate without Cleft Lip Other Health Conditions Fetal Alcohol Syndrome (FAS)
Defect MOST COMMON BIRTH DEFECTS COUNTS AND PREVALENCE RATES FOR HENNEPIN AND RAMSEY COUNTIES, RANKED BY FREQUENCY (2006 2009 DATA, TOTAL LIVE BIRTHS = 96,859) N Rate per 10,000 live births Total Defects 2590 267.40 Body System Category Atrial septal defect Cardiovascular 444 45.84 Ventricular septal defect Cardiovascular 324 33.45 Hypospadias and Epispadias Genitourinary 248 25.60 Obstructive genitourinary defect Genitourinary 196 20.24 Patent ductus arteriosus Cardiovascular 171 17.65 Pyloric stenosis Gastrointestinal 170 17.55 Down Syndrome Chromosomal 143 14.76 Cleft lip with and without cleft palate Orofacial 97 10.01 Pulmonary valve atresia and stenosis Cardiovascular 56 5.78 Cleft palate without cleft lip Orofacial 55 5.68
OTHER USES OF DATA Planning for implementation of newborn Critical Congenital Heart Disease screening using pulse oximitry Environmental Public Health Tracking program: Birth Defects Data & Measures report https://apps.health.state.mn.us/mndata/birth_metadata
ESTIMATED NUMBER OF CASES OF CCHD IN MINNESOTA Critical Congenital Heart Defects Estimated Expected Annual Case Count* Estimated from all cases identified in BDIS, regardless of maternal residence 2006-2009 Estimated using rates from Hennepin/Ramsey Counties only, 2006-2009 Hypoplastic Left Heart Syndrome 16 13 Pulmonary Atresia 41 40 Tetralogy of Fallot 30 34 Total Anomalous Pulmonary Venous Return N/A N/A Transposition of the Great Arteries 34 32 Tricuspid Valve Atresia & Stenosis 5 5 Truncus Arteriosus 5 4 Total CCHD, excluding TAPVR 131 128 * One child may have more than one of these defects and may be counted twice. Total number of children with CCHD, excluding TAPVR 114 116 Data from MN BDIS
RESEARCH
RESEARCH GOALS AND OBJECTIVES 2012-2014 Drafted in spring 2012 Overarching Goal: By the end of 2014, establish a foundation for including Minnesota birth defects surveillance data in ongoing analysis and research on birth defects.
RESEARCH GOAL #1 Establish a multidisciplinary birth defects research network in Minnesota Objective 1a: Establish a birth defects research network within MDH by the end of 2012 Newborn Screening program Environmental Public Health Tracking Objective 1b: Establish a statewide multidisciplinary birth defects research network in Minnesota by the end of 2014 If you are interested in getting involved in the planning, please let us know today.
RESEARCH GOAL #2 Establish an infrastructure and framework to facilitate the use of Minnesota birth defects data in research. Objective 2a: Establish a process for researchers to apply to use birth defects data by June 30, 2013 Objective 2b: Establish a process for reviewing and approving or declining research projects that seek to use birth defects data by June 30, 2013 Objective 2c: Establish a process for estimating costs associated with research and a mechanism to recoup these costs by the end of 2013
OTHER RESEARCH POSSIBILITIES National Birth Defects Prevention Network (NBDPN) a volunteer-based organization that addresses the issues of birth defects surveillance, research and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs. http://www.nbdpn.org/ National Birth Defects Prevention Study (NBDPS) the largest study in the U.S. looking at the causes of birth defects http://www.nbdps.org/aboutus/index.html
NBDPN: MULTI-STATE COLLABORATIVE PROJECTS NBDPN facilitates collaborative projects that utilize data from state birth defects registries. State Data Committee: Coordinates data use and data sharing Provides and coordinates technical assistance in study design, analysis and publication
RECENT NBDPN MULTI-STATE COLLABORATIVE PROJECTS Prevalence at Birth of Cleft Lip With or Without Cleft Palate: Data From the International Perinatal Database of Typical Oral Clefts. Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006 Geocoding capacity of birth defects surveillance programs: results from the National Birth Defects Prevention Network Geocoding Survey Public health projects for preventing the recurrence of neural tube defects in the United States Multistate study of the epidemiology of clubfoot
NATIONAL BIRTH DEFECTS PREVENTION STUDY (NBDPS) one of the largest U.S. studies looking at the risk factors for and potential causes of birth defects population-based, case-control study and has been collecting data since 1997 Sites have included: Arkansas, California, Georgia (CDC), Iowa, Massachusetts, New Jersey, New York, North Carolina, Texas, and Utah. Interviews and cheek cells from both cases (mothers who have had a pregnancy or baby affected by a birth defects) and controls (mothers who had a baby born in the same area/time) http://www.cdc.gov/ncbddd/birthdefects/nbdps.html NEW NOTE 11/7: please see additional slides at the end of this document with more details on NBDPS from the 2012 National Meeting
MINNESOTA MONITORS 46 CONDITIONS: GASTROINTESTINAL, GENITOURINARY Gastrointestinal Biliary Atresia Esophaegeal Atresia Hirschsprung's Disease Pyloric Stenosis Rectal and Large Intestinal Atresia / Stenosis Genitourinary Bladder Exstrophy Hypospadias and Epispadias Obstructive Genitourinary Defect Renal Agenesis / Hypoplasia
MINNESOTA MONITORS 46 CONDITIONS: MUSCULAR SKELETAL, ORAL, OTHER Muscular Skeletal Congenital Hip Dislocation Diaphragmatic Hernia Gastroschisis Omphalocele Reduction Deformity: Lower Limbs Reduction Deformity: Upper Limbs Oral Choanal Atresia Cleft Lip and Palate Cleft Palate without Cleft Lip Other Health Conditions Fetal Alcohol Syndrome (FAS)
Defect MOST COMMON BIRTH DEFECTS COUNTS AND PREVALENCE RATES FOR HENNEPIN AND RAMSEY COUNTIES, RANKED BY FREQUENCY (2006 2009 DATA, TOTAL LIVE BIRTHS = 96,859) N Rate per 10,000 live births Total Defects 2590 267.40 Body System Category Atrial septal defect Cardiovascular 444 45.84 Ventricular septal defect Cardiovascular 324 33.45 Hypospadias and Epispadias Genitourinary 248 25.60 Obstructive genitourinary defect Genitourinary 196 20.24 Patent ductus arteriosus Cardiovascular 171 17.65 Pyloric stenosis Gastrointestinal 170 17.55 Down Syndrome Chromosomal 143 14.76 Cleft lip with and without cleft palate Orofacial 97 10.01 Pulmonary valve atresia and stenosis Cardiovascular 56 5.78 Cleft palate without cleft lip Orofacial 55 5.68
OTHER USES OF DATA Planning for implementation of newborn Critical Congenital Heart Disease screening using pulse oximitry Environmental Public Health Tracking program: Birth Defects Data & Measures report https://apps.health.state.mn.us/mndata/birth_metadata
ESTIMATED NUMBER OF CASES OF CCHD IN MINNESOTA Critical Congenital Heart Defects Estimated Expected Annual Case Count* Estimated from all cases identified in BDIS, regardless of maternal residence 2006-2009 Estimated using rates from Hennepin/Ramsey Counties only, 2006-2009 Hypoplastic Left Heart Syndrome 16 13 Pulmonary Atresia 41 40 Tetralogy of Fallot 30 34 Total Anomalous Pulmonary Venous Return N/A N/A Transposition of the Great Arteries 34 32 Tricuspid Valve Atresia & Stenosis 5 5 Truncus Arteriosus 5 4 Total CCHD, excluding TAPVR 131 128 * One child may have more than one of these defects and may be counted twice. Total number of children with CCHD, excluding TAPVR 114 116 Data from MN BDIS
Defect MOST COMMON BIRTH DEFECTS COUNTS AND PREVALENCE RATES FOR HENNEPIN AND RAMSEY COUNTIES, RANKED BY FREQUENCY (2006 2009 DATA, TOTAL LIVE BIRTHS = 96,859) N Rate per 10,000 live births Total Defects 2590 267.40 Body System Category Atrial septal defect Cardiovascular 444 45.84 Ventricular septal defect Cardiovascular 324 33.45 Hypospadias and Epispadias Genitourinary 248 25.60 Obstructive genitourinary defect Genitourinary 196 20.24 Patent ductus arteriosus Cardiovascular 171 17.65 Pyloric stenosis Gastrointestinal 170 17.55 Down Syndrome Chromosomal 143 14.76 Cleft lip with and without cleft palate Orofacial 97 10.01 Pulmonary valve atresia and stenosis Cardiovascular 56 5.78 Cleft palate without cleft lip Orofacial 55 5.68
OTHER USES OF DATA Planning for implementation of newborn Critical Congenital Heart Disease screening using pulse oximitry Environmental Public Health Tracking program: Birth Defects Data & Measures report https://apps.health.state.mn.us/mndata/birth_metadata
ESTIMATED NUMBER OF CASES OF CCHD IN MINNESOTA Critical Congenital Heart Defects Estimated Expected Annual Case Count* Estimated from all cases identified in BDIS, regardless of maternal residence 2006-2009 Estimated using rates from Hennepin/Ramsey Counties only, 2006-2009 Hypoplastic Left Heart Syndrome 16 13 Pulmonary Atresia 41 40 Tetralogy of Fallot 30 34 Total Anomalous Pulmonary Venous Return N/A N/A Transposition of the Great Arteries 34 32 Tricuspid Valve Atresia & Stenosis 5 5 Truncus Arteriosus 5 4 Total CCHD, excluding TAPVR 131 128 * One child may have more than one of these defects and may be counted twice. Total number of children with CCHD, excluding TAPVR 114 116 Data from MN BDIS
RESEARCH
RESEARCH
RESEARCH GOALS AND OBJECTIVES 2012-2014 Drafted in spring 2012 Overarching Goal: By the end of 2014, establish a foundation for including Minnesota birth defects surveillance data in ongoing analysis and research on birth defects.
RESEARCH GOAL #1 Establish a multidisciplinary birth defects research network in Minnesota Objective 1a: Establish a birth defects research network within MDH by the end of 2012 Newborn Screening program Environmental Public Health Tracking Objective 1b: Establish a statewide multidisciplinary birth defects research network in Minnesota by the end of 2014 If you are interested in getting involved in the planning, please let us know today.
RESEARCH GOAL #2 Establish an infrastructure and framework to facilitate the use of Minnesota birth defects data in research. Objective 2a: Establish a process for researchers to apply to use birth defects data by June 30, 2013 Objective 2b: Establish a process for reviewing and approving or declining research projects that seek to use birth defects data by June 30, 2013 Objective 2c: Establish a process for estimating costs associated with research and a mechanism to recoup these costs by the end of 2013
Defect MOST COMMON BIRTH DEFECTS COUNTS AND PREVALENCE RATES FOR HENNEPIN AND RAMSEY COUNTIES, RANKED BY FREQUENCY (2006 2009 DATA, TOTAL LIVE BIRTHS = 96,859) N Rate per 10,000 live births Total Defects 2590 267.40 Body System Category Atrial septal defect Cardiovascular 444 45.84 Ventricular septal defect Cardiovascular 324 33.45 Hypospadias and Epispadias Genitourinary 248 25.60 Obstructive genitourinary defect Genitourinary 196 20.24 Patent ductus arteriosus Cardiovascular 171 17.65 Pyloric stenosis Gastrointestinal 170 17.55 Down Syndrome Chromosomal 143 14.76 Cleft lip with and without cleft palate Orofacial 97 10.01 Pulmonary valve atresia and stenosis Cardiovascular 56 5.78 Cleft palate without cleft lip Orofacial 55 5.68
OTHER USES OF DATA Planning for implementation of newborn Critical Congenital Heart Disease screening using pulse oximitry Environmental Public Health Tracking program: Birth Defects Data & Measures report https://apps.health.state.mn.us/mndata/birth_metadata
ESTIMATED NUMBER OF CASES OF CCHD IN MINNESOTA Critical Congenital Heart Defects Estimated Expected Annual Case Count* Estimated from all cases identified in BDIS, regardless of maternal residence 2006-2009 Estimated using rates from Hennepin/Ramsey Counties only, 2006-2009 Hypoplastic Left Heart Syndrome 16 13 Pulmonary Atresia 41 40 Tetralogy of Fallot 30 34 Total Anomalous Pulmonary Venous Return N/A N/A Transposition of the Great Arteries 34 32 Tricuspid Valve Atresia & Stenosis 5 5 Truncus Arteriosus 5 4 Total CCHD, excluding TAPVR 131 128 * One child may have more than one of these defects and may be counted twice. Total number of children with CCHD, excluding TAPVR 114 116 Data from MN BDIS
RESEARCH
RESEARCH GOALS AND OBJECTIVES 2012-2014 Drafted in spring 2012 Overarching Goal: By the end of 2014, establish a foundation for including Minnesota birth defects surveillance data in ongoing analysis and research on birth defects.
RESEARCH GOAL #1 Establish a multidisciplinary birth defects research network in Minnesota Objective 1a: Establish a birth defects research network within MDH by the end of 2012 Newborn Screening program Environmental Public Health Tracking Objective 1b: Establish a statewide multidisciplinary birth defects research network in Minnesota by the end of 2014 If you are interested in getting involved in the planning, please let us know today.
RESEARCH GOAL #2 Establish an infrastructure and framework to facilitate the use of Minnesota birth defects data in research. Objective 2a: Establish a process for researchers to apply to use birth defects data by June 30, 2013 Objective 2b: Establish a process for reviewing and approving or declining research projects that seek to use birth defects data by June 30, 2013 Objective 2c: Establish a process for estimating costs associated with research and a mechanism to recoup these costs by the end of 2013
OTHER RESEARCH POSSIBILITIES National Birth Defects Prevention Network (NBDPN) a volunteer-based organization that addresses the issues of birth defects surveillance, research and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs. http://www.nbdpn.org/ National Birth Defects Prevention Study (NBDPS) the largest study in the U.S. looking at the causes of birth defects http://www.nbdps.org/aboutus/index.html
RESEARCH
RESEARCH GOALS AND OBJECTIVES 2012-2014 Drafted in spring 2012 Overarching Goal: By the end of 2014, establish a foundation for including Minnesota birth defects surveillance data in ongoing analysis and research on birth defects.
RESEARCH GOAL #1 Establish a multidisciplinary birth defects research network in Minnesota Objective 1a: Establish a birth defects research network within MDH by the end of 2012 Newborn Screening program Environmental Public Health Tracking Objective 1b: Establish a statewide multidisciplinary birth defects research network in Minnesota by the end of 2014 If you are interested in getting involved in the planning, please let us know today.
RESEARCH GOAL #2 Establish an infrastructure and framework to facilitate the use of Minnesota birth defects data in research. Objective 2a: Establish a process for researchers to apply to use birth defects data by June 30, 2013 Objective 2b: Establish a process for reviewing and approving or declining research projects that seek to use birth defects data by June 30, 2013 Objective 2c: Establish a process for estimating costs associated with research and a mechanism to recoup these costs by the end of 2013
OTHER RESEARCH POSSIBILITIES National Birth Defects Prevention Network (NBDPN) a volunteer-based organization that addresses the issues of birth defects surveillance, research and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs. http://www.nbdpn.org/ National Birth Defects Prevention Study (NBDPS) the largest study in the U.S. looking at the causes of birth defects http://www.nbdps.org/aboutus/index.html
NBDPN: MULTI-STATE COLLABORATIVE PROJECTS NBDPN facilitates collaborative projects that utilize data from state birth defects registries. State Data Committee: Coordinates data use and data sharing Provides and coordinates technical assistance in study design, analysis and publication
RECENT NBDPN MULTI-STATE COLLABORATIVE PROJECTS Prevalence at Birth of Cleft Lip With or Without Cleft Palate: Data From the International Perinatal Database of Typical Oral Clefts. Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006 Geocoding capacity of birth defects surveillance programs: results from the National Birth Defects Prevention Network Geocoding Survey Public health projects for preventing the recurrence of neural tube defects in the United States Multistate study of the epidemiology of clubfoot
NATIONAL BIRTH DEFECTS PREVENTION STUDY (NBDPS) one of the largest U.S. studies looking at the risk factors for and potential causes of birth defects population-based, case-control study and has been collecting data since 1997 Sites have included: Arkansas, California, Georgia (CDC), Iowa, Massachusetts, New Jersey, New York, North Carolina, Texas, and Utah. Interviews and cheek cells from both cases (mothers who have had a pregnancy or baby affected by a birth defects) and controls (mothers who had a baby born in the same area/time) http://www.cdc.gov/ncbddd/birthdefects/nbdps.html NEW NOTE 11/7: please see additional slides at the end of this document with more details on NBDPS from the 2012 National Meeting
RECENT ANALYSES BY NBDPS Medication Use During Pregnancy Medicine To Ease Morning Sickness and Risk of Birth Defects Treatment With Prescription Painkillers (Opioids) and Birth Defects Clomiphene Citrate and Birth Defects Birth Defects and Acetaminophen Use Smoking and Neural Tube Defects Genital Tract Infections and Birth Defects Caffeine and Selected Birth Defects http://www.nbdps.org/research/recentfindings.html
PREVENTION
PREVENTION EFFORTS 2011 CDC 2006 report: Recommendations to Improve Preconception Health and Health Care --- United States Birth defects program identified a need for baseline Minnesota preconception health data Preconception Health in Minnesota data book: PRAMS Coordinator, Women s Health Consultant, MCH Epidemiologist, student worker Used data from both MN PRAMS and BRFSS surveillance systems RFP in spring 2012 2012 MCH Section published the first Preconception Health in Minnesota Data Book: http://www.health.state.mn.us/divs/fh/mch/preconception/documents/pre conceptiondatabook.pdf
PRECONCEPTION HEALTH IN MINNESOTA GRANT PROGRAM Women s Health Consultant and Birth Defects program developed the Preconception Health in Minnesota RFP Goal: To improve preconception health and care for nonpregnant, reproductive age women in Minnesota, through support of evidencebased preconception health interventions that prevent and/or reduce the risk for birth defects. Two required components: 1. Routine Risk Assessment and Counseling 2. Intervention in one of the following areas: Reproductive Health Reproductive Life Plans Substance Use Alcohol, tobacco and other drugs Nutrition & Weight Folic Acid Obesity/ Overweight Chronic Disease Diabetes Hypertension Teratogenic Medication Management
PREVENTION
PREVENTION EFFORTS 2011 CDC 2006 report: Recommendations to Improve Preconception Health and Health Care --- United States Birth defects program identified a need for baseline Minnesota preconception health data Preconception Health in Minnesota data book: PRAMS Coordinator, Women s Health Consultant, MCH Epidemiologist, student worker Used data from both MN PRAMS and BRFSS surveillance systems RFP in spring 2012 2012 MCH Section published the first Preconception Health in Minnesota Data Book: http://www.health.state.mn.us/divs/fh/mch/preconception/documents/pre conceptiondatabook.pdf
PRECONCEPTION HEALTH IN MINNESOTA GRANT PROGRAM Women s Health Consultant and Birth Defects program developed the Preconception Health in Minnesota RFP Goal: To improve preconception health and care for nonpregnant, reproductive age women in Minnesota, through support of evidencebased preconception health interventions that prevent and/or reduce the risk for birth defects. Two required components: 1. Routine Risk Assessment and Counseling 2. Intervention in one of the following areas: Reproductive Health Reproductive Life Plans Substance Use Alcohol, tobacco and other drugs Nutrition & Weight Folic Acid Obesity/ Overweight Chronic Disease Diabetes Hypertension Teratogenic Medication Management
PREVENTION
PREVENTION EFFORTS 2011 CDC 2006 report: Recommendations to Improve Preconception Health and Health Care --- United States Birth defects program identified a need for baseline Minnesota preconception health data Preconception Health in Minnesota data book: PRAMS Coordinator, Women s Health Consultant, MCH Epidemiologist, student worker Used data from both MN PRAMS and BRFSS surveillance systems RFP in spring 2012 2012 MCH Section published the first Preconception Health in Minnesota Data Book: http://www.health.state.mn.us/divs/fh/mch/preconception/documents/pre conceptiondatabook.pdf
PRECONCEPTION HEALTH IN MINNESOTA GRANT PROGRAM Women s Health Consultant and Birth Defects program developed the Preconception Health in Minnesota RFP Goal: To improve preconception health and care for nonpregnant, reproductive age women in Minnesota, through support of evidencebased preconception health interventions that prevent and/or reduce the risk for birth defects. Two required components: 1. Routine Risk Assessment and Counseling 2. Intervention in one of the following areas: Reproductive Health Reproductive Life Plans Substance Use Alcohol, tobacco and other drugs Nutrition & Weight Folic Acid Obesity/ Overweight Chronic Disease Diabetes Hypertension Teratogenic Medication Management
PRECONCEPTION HEALTH IN MINNESOTA GRANT PROGRAM Six organizations funded to use evidence-based practice and evaluate outcomes Reproductive life plans Nutrition and obesity, incl. folic acid Grantees: Family Tree, Inc., St. Paul/Ramsey Co., Washington Co., Hennepin County, Greater Twin Cities Metro Area Fillmore-Houston CHB Horizon Community Health Board: Douglas, Pope, Stevens, Grant, and Traverse Mahube Community Council, Inc. (Mahube-Otwa Community Council): Mahnomen, Hubbard, Becker, Ottertail and Wadena Baby's Space: A Place to Grow: Phillip's neighborhood in Minneapolis, Native American population Planned Parenthood Minnesota, North Dakota, South Dakota: Hispanics served at Centro de Salud in South Minneapolis Meeker-McLeod-Sibley Community Health Services Two year grants Projects started after July 2012 Contractor hired to plan/coordinate evaluation
SERVICES
PRECONCEPTION HEALTH IN MINNESOTA GRANT PROGRAM Six organizations funded to use evidence-based practice and evaluate outcomes Reproductive life plans Nutrition and obesity, incl. folic acid Grantees: Family Tree, Inc., St. Paul/Ramsey Co., Washington Co., Hennepin County, Greater Twin Cities Metro Area Fillmore-Houston CHB Horizon Community Health Board: Douglas, Pope, Stevens, Grant, and Traverse Mahube Community Council, Inc. (Mahube-Otwa Community Council): Mahnomen, Hubbard, Becker, Ottertail and Wadena Baby's Space: A Place to Grow: Phillip's neighborhood in Minneapolis, Native American population Planned Parenthood Minnesota, North Dakota, South Dakota: Hispanics served at Centro de Salud in South Minneapolis Meeker-McLeod-Sibley Community Health Services Two year grants Projects started after July 2012 Contractor hired to plan/coordinate evaluation
SERVICES
PREVENTION
PREVENTION EFFORTS 2011 CDC 2006 report: Recommendations to Improve Preconception Health and Health Care --- United States Birth defects program identified a need for baseline Minnesota preconception health data Preconception Health in Minnesota data book: PRAMS Coordinator, Women s Health Consultant, MCH Epidemiologist, student worker Used data from both MN PRAMS and BRFSS surveillance systems RFP in spring 2012 2012 MCH Section published the first Preconception Health in Minnesota Data Book: http://www.health.state.mn.us/divs/fh/mch/preconception/documents/pre conceptiondatabook.pdf
PRECONCEPTION HEALTH IN MINNESOTA GRANT PROGRAM Women s Health Consultant and Birth Defects program developed the Preconception Health in Minnesota RFP Goal: To improve preconception health and care for nonpregnant, reproductive age women in Minnesota, through support of evidencebased preconception health interventions that prevent and/or reduce the risk for birth defects. Two required components: 1. Routine Risk Assessment and Counseling 2. Intervention in one of the following areas: Reproductive Health Reproductive Life Plans Substance Use Alcohol, tobacco and other drugs Nutrition & Weight Folic Acid Obesity/ Overweight Chronic Disease Diabetes Hypertension Teratogenic Medication Management
PRECONCEPTION HEALTH IN MINNESOTA GRANT PROGRAM Six organizations funded to use evidence-based practice and evaluate outcomes Reproductive life plans Nutrition and obesity, incl. folic acid Grantees: Family Tree, Inc., St. Paul/Ramsey Co., Washington Co., Hennepin County, Greater Twin Cities Metro Area Fillmore-Houston CHB Horizon Community Health Board: Douglas, Pope, Stevens, Grant, and Traverse Mahube Community Council, Inc. (Mahube-Otwa Community Council): Mahnomen, Hubbard, Becker, Ottertail and Wadena Baby's Space: A Place to Grow: Phillip's neighborhood in Minneapolis, Native American population Planned Parenthood Minnesota, North Dakota, South Dakota: Hispanics served at Centro de Salud in South Minneapolis Meeker-McLeod-Sibley Community Health Services Two year grants Projects started after July 2012 Contractor hired to plan/coordinate evaluation
SERVICES
LPH NOTIFICATION AND REFERRAL ASSESSMENT SURVEY RESULTS BDMA notified counties of 1,150 children with confirmed birth defects in this period LPH received family s demographic information and child s birth defect diagnoses 75 agencies received notifications LPH key contacts completed surveys about services using an MDH web survey. Surveys were completed for 910 children Residents of 66 counties Response rate: 79%
BIRTH DEFECT TYPE LPH key contacts accepted referrals for children with any of the 45 birth defects monitored by BDMA, regardless of severity of condition Survey results were broken out by severity of condition, which eventually resulted in a new tier classification 53% 32% 14% Not complex (-> Tier 0) More severe (-> Tier 1) Severe or Multiple Dx (-> Tier 2)
WAS THE BDMA NOTIFICATION THE FIRST TIME LPH LEARNED ABOUT THIS CHILD? All Not complex (-> Tier 0) More severe (-> Tier 1) Severe or Multiple Dx (-> Tier 2) Yes, BDMA was first notification 57% 63% 50% 55% No, LPH already knew of this child/family 43% 37% 50% 45%
PRIOR REFERRAL SOURCE TO LPH All Not complex (-> Tier 0) More severe (-> Tier 1) Severe or Multiple Dx (-> Tier 2) Health Care Provider or Hospital 29 28 29 30 County notification of high risk births (Vital Records MDH) 35 38 29 35 Newborn Hearing Screening program notified them 1 0 2 <1 Other source 35 34 40 35 Family/parent, WIC, Another county, Head Start, Early Childhood teacher/ecfe, Family Home Visiting, Health plan, Newspaper, MDH Hep B program
LPH CONTACTS WITH FAMILIES 35 LPH reported they had contact with 65% of the children s families Not complex (-> Tier 0): 57% More severe (-> Tier 1): 70% Severe or Multiple Dx (-> Tier 2): 68% 65 Contacted No contact
REASON GIVEN WHY LPH DID NOT HAVE CONTACT WITH FAMILY All Not complex (-> Tier 0) More severe (-> Tier 1) Severe or Multiple Dx (-> Tier 2) We don t contact for this condition 62% 69% 56% 58% Child moved out of the county 1% 0% 3% <1% Unable to locate family 10% 15% 8% 7% Other reason please specify 27% 17% 33% 34% Write in responses for Other reason: No prior knowledge of child/no prior referral to public health services (problem with response timing) Left telephone message and sent letter, no response Sent letter only, no telephone number avail, no response HMG EI open
PROGRAMS & SERVICES USED Service/Program Yes No Not applicable/n ot eligible I don t have access to this information WIC 35% 24% 7% 34% Follow Along Program 26% 50% 6% 18% Family Home Visiting 24% 61% 1% 14% Help Me Grow/Part C 30% 25% 3% 42% MA/MN Care 39% 22% 8% 31% Social Security Disability 7% 21% 7% 64% Some variation by severity of condition, e.g. children with less severe conditions had low reported participation in Help Me Grow/Part C: 12% Accessing information was a big factor for some types of services (WIC, Part C, SSI, MA/MNCare)
MEDICAL/INTERPRETER SERVICES Service/Program Yes No I don t have access to this information Health Care Home 62% 8% 30% Primary Care Provider 55% 0% 44% Interpreter n/a 96% 4% Interpreter services Provided in person and by phone Spanish (17), Somali (9), Hmong (2), Russian, Korean, Nepali, deaf/hard of hearing
OTHER PROGRAMS FAMILIES ARE USING (WRITE-IN) Car seat Child Protective Services Children s Hospital One-time home visit, not on-going FHV program Down Syndrome Support Group ECFE Early Intervention Physical Therapy Occupational Therapy Energy Assistance Program Salvation Army Genetic Evaluation Speech therapy Deaf and Hard of Hearing Services MOPS Skilled Nurse visits PCA assessment Informal mom s group Respite plan Comments included programs parents were referred to but did not participate or was not eligible: TEFRA, FHV, Follow Along, WIC, Help Me Grow
QUESTIONS? Contacts: Barbara Frohnert barbara.frohnert@state.mn.us 651-201-5953 Jan Sieger janice.sieger@state.mn.us 651-201-3638 Kris Peterson Oehlke 651-201-3648 kristin.oehlke@state.mn.us
BIRTH DEFECTS RESEARCH WHAT S HAPPENING NATIONALLY NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING National Birth Defects Prevention Study-NBDPS largest population-based case control study done in US aim to ID genetic and environmental risk factors for 30 selected birth defects looks at birth defects of unknown etiology Started collecting data for October 1997 births To date over 41,000 women interviewed
NBDPS STUDY CENTERS NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING
NBDPS DATA COLLECTION STEPS NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Step 1: Cases identified from enhanced birth defects surveillance systems Step 2: Controls selected from hospital or vital records Step 3: Information packet sent out to mother Step 4: Telephone interview with mother Step 5: Buccal collection (baby, mother, father) Step 6: Mothers get yearly NBDPS newsletter
STUDY PARTICIPANTS: CASES NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Around 3500 cases interviewed each year Standard, detailed case definitions used Clinical geneticists review case records Each specific defect category classified by the same geneticist Heart defects are assigned to a single diagnostic category by pediatric cardiologists
STUDY PARTICIPANTS: CONTROLS NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Random sample of 1200 live-born infants/yr Selected from birth certs or birth hospitals in the same geographic region as case No major birth defects
NBDPS INTERVIEW PROTOCOL NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Maternal Interview Computer-assisted telephone interview Conducted from 6 weeks to up to 2 years after delivery Offered in English or Spanish Participation among cases is ~70% Participation among controls is ~67%
NBDPS BIOLOGIC SPECIMENS COLLECTED NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Buccal Cell Collection Self-collection using cytobrushes Two cytobrushes each for infant, mother, father odna from one brush remains at the local site odna from the other brush is sent to central repository Participation among cases is ~ 56% Participation among controls is ~ 50%
NBDPS QUESTIONAIRE TOPICS NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Exposure time period from 3 months before (b3) to end of pregnancy (P9) Pregnancy history Maternal disease (hypertension, seizures, diabetes, respiratory infection, other chronic) Meds used for those chronic diseases, and All medications taken listed by name Use of vitamins and herbals
NBDPS QUESTIONNAIRE TOPICS NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Food frequency questionnaire for year before pregnancy Maternal and paternal occupations Places of residence Maternal smoking, alcohol and drug use Family history Demographics Stress Physical activity
NBDPS ANALYTICAL DATABASE MOST RECENT (1997-2007) CONTAINS NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Controls 8494 Spina bifida 941 Dandy-Walker malformation 130 Tetralogy of Fallot 886 Ebstein anomaly 124 N = Cleft lip with or without cleft palate 2283 Hypospadias 1697 Craniosynostosis 1072 Gastroschisis 972 N =
STRENGTHS OF NBDPS NOTE: THIS SLIDE IS FROM A PRESENTATION FROM THE NBDPN/NBDPS 2012 NATIONAL MEETING Population-based study Ability to assess individual birth defects because of large sample size Very clear case definition Includes information about environmental exposures Biologic samples available for infant, mother and father