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Prevention of Disabilities

How Can We Improve the Collection of Birth Data at the State Level?

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This is a call for legislation that each state accepts a new minimum standard birth certificate and to update medical and data agencies for recording the new standard for uniform, reliable data collection.

Since the last update of the U.S. Standard Certificate of Live Birth in 2003, almost all 50 states have adopted this  U.S. standard. Only 44 states had adopted the standard by 2013. This standard is our only hope of collecting data at birth and we are waiting 10 years for states to ratify the standard!

By 2015, it is expected that data for all reporting areas will be based on the 2003 U.S. standard certificate providing national data for these and many other important demographic and medical and health items. (1).

There is an epidemic of Developmental Disabilities and we are waiting for 10 years to update data collection!

The National Center for Health Statistics  (NCHS) does not “mandate” that States collect all the data on the standard certificate, “NCHS strongly encourages the States to conform to the standards as closely as possible. Even small deviations from the Standard can have critical implications for both the states’ and national files because of the loss of data, quality, and comparability.” (2)

Thirteen years ago (2003) it was a lot of work to automate the record keeping of hospitals and state and federal agencies to collect the data. With ongoing advances in automation of record keeping, medical and data collection agencies at the local, state and federal level will be able to be much more efficient in updating to a new revised standard. The standard could be more comprehensive, ask more detailed questions because of computer automation, and the essential information could be mandated.

The NCHS, the National Association for Public Health Statistics and Information Systems (NAPHSIS), and individual state and jurisdictional vital statistics partners have been working since 2003  to improve the quality of birth data by developing national standards for the automatic transfer of medical and  health birth certificate data (2003 standard) directly from hospital electronic records to state electronic birth registration systems. The NCHS is also working to improve data timeliness and quality via increased standardization for 57 vital records reporting areas (states and provinces of US) to federal vital statistics. (3)

Data collected on the U.S. Standard Certificate of Live Birth would benefit government, individual, and medical, obstetric and pediatric research efforts.

Let’s get going, revise the standard and implement the new data standard across all 50 states!

What other road blocks in collecting data for research do we face to find the causes of Developmental Disabilities so we might prevent disability?

If you have information about the prevention of disability, please comment or send us an e-mail.

New Horizons Un-Limited invites you to visit our Report on the Prevention of Disabilities which focuses on the prevention of Developmental Disabilities.


References

(1) National Vital Statistics Reports Volume 62, Number 4 December 10, 2013, -Newly Released Data From the Revised U.S. Birth Certificate, 2011. <http://www.cdc.gov/nchs/data/nvsr/nvsr62/nvsr62_04.pdf>.

(2) Department of Health and Human Services, CDC, National Center for Health Statistics, Letter 08/29/2001, To Colleague, From Mary Anne Freedman, Director, Division of Vital Statistics.

(3) CDC, National Vital Statistics Reports, Vol. 62, No. 2, July 22, 2013 pp. 9-10.

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