Michigan Birth Defects Registry Presented by: Mary Kleyn, MS October 23, 2008.

Michigan Birth Defects Registry

Presented by: Mary Kleyn, MS

October 23, 2008

Public Health Importance

1 in 33 babies is born with a birth defect1

120,000 babies are born with a birth defect in the United States every year1

Associated with adverse outcomes Infant mortality2

Childhood mortality3

Long-term disability 4

Michigan Birth Defects Program

Components Michigan Birth Defects Follow-up Program

Genomics Section, Division of Genomics, Perinatal Health and Chronic Disease Epidemiology

Michigan Birth Defects Registry (MBDR) Vital Records and Health Data Development

Section, Division for Vital Records and Health Statistics

MBDR

Statewide reporting began in 1992 Passive reporting Available data

1992-2006 birth cohorts Infant and maternal identifiers Diagnosis and procedure codes

Collection-Reporting Sources

Hospital/Lab Report

Death RecordBirth Record

Birth Defect Case

Supplemental Sources:

•NBS

•FIMR

•EHDI

•CSHCS

•Pediatric Genetic Clinics

Collection-Submission Types

Paper abstract Electronic Electronic Birth

Certificate (EBC) Birth/Death records

0%

20%

40%

60%

80%

100%

2000-2001

2002-2003

2004-2005

2006-2007

Type of MBDR Report Submission by Year of Admission, Michigan 2000-2007

Birth/Death

EBC

Electronic

Paper

Current Status

Almost 400,000 reports have been processed 32,000 reports processed annually 12,000 new cases annually

MBDR Data (2003)

Overall prevalence of birth defects: 768.6/10,000

Musculoskeletal System, 21%

Heart and Circulatory

System, 22%

Other, 39%

Genitourinary System, 18%

Diagnostic Group Percentage

Heart and Circulatory System 22%

Musculoskeletal System 21%

Genitourinary System 18%

Respiratory System 7%

Digestive System 6%

Central Nervous System 5%

Eye 4%

Integument 3%

Chromosomal Anomaly 3%

Orofacial Clefts 2%

Ear/Face/Neck 2%

Other/Unspecified 7%

Current Use

2006 Annual Report5

The Michigan Monitor6

NTD Follow-up Program Articles7,3

Presentations/Posters5

Future Use

Proposed study Neonatal Intensive Care Unit Length of Stay and

Accuracy of Diagnosis of Birth Defects, Michigan, 1999-2004

Develop and disseminate “profile sheets” on birth defects

Map rates and perform cluster analyses of select birth defects over time

External Use

Wayne State University Metabolic newborn screening for congenital heart defect Tandem mass spectrometry of newborn birth defects

University of Michigan Spatial analysis of congenital anomalies reported to the

MBDR from 1992-2002 Mortality trends in children with hypoplastic left heart

CDC Leading major birth defects among births to women of Arab

ancestry living in Michigan, 1992-2002

Strengths

Centralized reporting to MDCH Facilities have several reporting methods Population-based Externally funded

Limitations

No data exchange between states Implications:

This may cause an undercount of the actual number of cases and may significantly affect the completeness of reporting for counties whose residents commonly travel outside Michigan for health care.

Possible Solutions: Rates are calculated only for resident children

who are also born in Michigan. Establish interstate data exchange

Limitations

Passive reporting Implications:

Inconsistent or incomplete reporting may lead to a reduced number of cases.

Over-reporting due to suspected diagnoses that are later ruled out may cause on over count of the number of cases.

Both situations make comparing rates of birth defects over time or between regions difficult.

Possible Solutions: Standardization of collection and quality assurance

over time Perform linkages with other databases to check

diagnostic accuracies

Limitations

Passive reporting Implications:

Case reports may contain missing data, making the data unusable.

Possible Solutions: A web-based training module was

implemented in January 2006 for staff who submit case reports.

Develop a “report” for hospitals on what information is missing and how often it is missing

Limitations

Timeliness Implications:

Valuable time may be lost by not observing important trends until 2 years after they occur.

Possible Solution: Train facilities to use electronic reporting

instead of paper reporting, because this requires fewer steps for quality assurance, data entry, and formatting.

Limitations

No data on outcomes of prenatal diagnoses of birth defects

Implications: The outcomes of prenatal diagnoses of birth

defects, particularly spontaneous or elective termination, may affect the rates of birth defects.

Possible Solution: The Prenatal Ascertainment Project collected

data on prenatally diagnosed birth defects from 8 Michigan hospitals.

Discussion

Purpose of MBDR Collect statistical data on the incidence of birth

defects and monitor trends Facilitate research studies on etiology of

various birth defects Provide data for prevention efforts, program

planning and evaluation

Michigan Birth Defects Registry (MBDR) - Vital Records and Health Data Development Section

Glenn Copeland, DirectorWon Silva, ManagerLorrie Simmons, Quality

Improvement Coordinator

Genomics & Birth Defects Program - Division of Genomics, Perinatal Health and Chronic Disease Epidemiology

Violanda GrigorescuJanice BachJoan Ehrhardt, Program

CoordinatorNancy Deising, Care

Coordination Specialist

MDCH Birth Defects Team

Maternal & Child Health Epidemiology Section-

Steve Korzeniewski

Mary Kleyn, Epidemiologist

Thank You

Any questions?

References

1. Centers for Disease Control and Prevention. Birth Defects: Frequently Asked Questions. http://www.cdc.gov/ncbddd/bd/faq1.htm.

2. Anderson RN, Kochanek KD, Murphy SL. Report of the final mortality statistics, 1995. Hyattsville, Maryland: US Department of Health and Human Services, CDC, National Center for Health Statistics, 1997. (Monthly vital statistics report; vol 45, no. 11, suppl 2).

3. Copeland GE, Kirby RS. Using birth defects registry data to evaluate infant and childhood mortality associated with birth defects: An alternative to traditional mortality assessment using underlying cause of death statistics. Birth Defects Research Part A: Clinical and Molecular Teratology 79:792-797 (2007).

4. Centers for Disease Control and Prevention. Birth Defects. http://www.cdc.gov/ncbddd/bd/default.htm.

5. http://www.mdch.state.mi.us/pha/osr/BirthDefects/Birth%20Defects%20Annual%20Report%2005.pdf

6. http://www.michigan.gov/documents/mdch/Mi_Monitor_Summer_2007_206358_7.pdf

7. Berger KH, Zhu B, Copeland G. Mortality throughout early childhood for Michigan Children Born with Congenital Anomalies, 1992-1998. Birth Defects Research Part A: Clinical and Molecular Teratology 67:656-661 (2003).