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Michigan Newborn Screening & Live Births Records Linkage and Follow-Up of Potentially Un-Screened Infants. Steven J. Korzeniewski, MA, MSc, Maternal & Child Health Epidemiology Section Manager Violanda Grigorescu, MD, MSPH, Glenn E. Copeland, BS, William I. Young, Ph.D.,

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Michigan Newborn Screening & Live Births Records Linkage and Follow-Up of Potentially Un-Screened Infants

Steven J. Korzeniewski, MA, MSc,

Maternal & Child Health Epidemiology Section Manager

Violanda Grigorescu, MD, MSPH, Glenn E. Copeland, BS, William I. Young, Ph.D.,

Michigan Department of Community Health


Outline
Outline Follow-Up of Potentially Un-Screened Infants

Background/Intent of linkage

Methods (software, data management, algorithm)

Results

Discussion

Public Health Implications


Background
Background Follow-Up of Potentially Un-Screened Infants

Linkages re-initiated to identify live births potentially unscreened.

Initial efforts were not sustainable

Intended to be mutually beneficial to newborn screening follow-up program and vital records.

Means to assess data quality


Methods
Methods Follow-Up of Potentially Un-Screened Infants

Data received from November 2007 through March 2008 were used for this study

2008 transitioned from DOS based to Web based electronic birth certificate system

Newborn screening card number included on birth record

SAS v9.1 (Cary, N.C.) used to create text files

Record linkage and follow-up conducted by NBS Follow-up Program

Newborn screening & Michigan Care Improvement Registry (MCIR) data used for follow-up


Methods1
Methods Follow-Up of Potentially Un-Screened Infants

Linkage via Link Plus

A probabilistic record linkage program

Developed for cancer registries at the Centers for Disease Control and Prevention’s (CDC) Division of Cancer Prevention and Control in support of CDC's National Program of Cancer Registries (NCPR).

Can be used with any type of data in fixed width or delimited format

Free $$


Methods2
Methods Follow-Up of Potentially Un-Screened Infants

Linkage score (probabilistic linkage)

based on the theoretical frame work developed by Fellegi and Sunter (1969)

sum of the logarithm of odds across all matching variables, based on the probability that a matching variable agrees given that a comparison pair is a match and the probability that a matching variable agrees given that a comparison pair is not a match


Methods3
Methods Follow-Up of Potentially Un-Screened Infants

Blocking variables - used to ‘block’ (or partition) the two files

Matching variables are compared between records matching on the blocking variable.


Methods Follow-Up of Potentially Un-Screened Infants


Methods4
Methods Follow-Up of Potentially Un-Screened Infants

Follow-up

Unmatched records sent to follow-up staff

Staff search NBS data

Contact birth hospital

Send certified letter to parent requesting screen or signed refusal letter


Results
Results Follow-Up of Potentially Un-Screened Infants


Results1
Results Follow-Up of Potentially Un-Screened Infants


Discussion
Discussion Follow-Up of Potentially Un-Screened Infants

Probabilistic linkage is subjective………. & useful

Linkage success is a function of

Cutoff selection

Data quality

Strategy

An ability to deal with discordance

Match rates change over time and may require alternations in linkage algorithms

Manual checking of initial linkage results and follow-up results must be used to determine algorithm changes and avoid false matches.

Live Births to NBS data matching is a “best case” scenario given data are collected at virtually the same time, same place, and often by the same person.


Discussion1
Discussion Follow-Up of Potentially Un-Screened Infants

Significant investment of time for

Initial data management programming

Understanding how to select algorithm

Determination of borderline matches

Assessment of follow-up results

Benefits beyond identification of potentially unscreened children include

Data quality check

Link to various datasets through vital records (i.e.- birth defects, EHDI, etc.)


Public health implications
Public Health Implications Follow-Up of Potentially Un-Screened Infants

Link Plus is applicable to MCH databases

Linkage facilitates data usage with minimal cost investments

Linkage is successful at detecting unscreened infants (we have identified several)

However, linkage should be handled with caution


Acknowledgements
Acknowledgements Follow-Up of Potentially Un-Screened Infants

Co-investigators: Violanda Grigorescu, MD, MSPH, Glenn E. Copeland, BS, William I. Young, Ph.D.,

NBS Follow-up Staff


Contact
Contact Follow-Up of Potentially Un-Screened Infants

[email protected]

Thank You


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