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Prevention of Disabilities

Are We Doing Everything We Can Do to Collect the Data of Birth for Research to Find Causes of Developmental Disabilities?

 

Adult hand holding infant's hand

We must ask ourselves, are we doing everything we can do to collect the data of birth for research, are we doing the research to find the cause? Where is the data of birth injury? Where is the data to determine the cause?

We agree with the Centers for Disease Control and Prevention (CDC) that as a society, we cannot find causes, until we are effectively collecting data before, during, or after birth to identify causes or risk factors of Developmental Disabilities.

Where do we collect data; how and what data is collected?

Other than the U.S. Standard Certificate of Live Birth and its accompanying parent survey and medical records there is no data collected at birth.

Other entities gather disability data, but no other data is collected at birth, except for the mandatory reporting of birth defects. Other birth anomalies which are attributed to cause Developmental Disability are not included in this mandatory reporting.

The CDC collects data about birth for their research from two main research studies in the U.S. and projects their findings for statistics, however, these are based on parent or another responsible adult answering questions about birth. The CDC acknowledges that these studies are the only research being conducted on Developmental Disability.

• The CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network is the only collaborative network to track the number and characteristics of children with ASD in multiple communities in the U.S.  The ADDM Network is able to look at not only how many children have ASD, but which groups are more likely to be identified and at what age they are likely to be diagnosed. (1)

• The CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) is an ongoing and systematic monitoring of prevalence of selected Developmental Disabilities who reside in Atlanta. (1)

• Most other projects are on early detection and collaboration between providers and families. (1)

The CDC carries out the research for Developmental Disabilities, but these are done after birth and after diagnosis and rely on adult memory of birth rather than data collected at birth. The important Autism and Cerebral Palsy research by the CDC is based upon surveys requested of a responsible adult. Information on developmental disability is collected in surveys in which the focus is not on prevention, but a surveillance network of disability. Although the CDC reports these are detailed surveys, surveillance questions would include such items as what insurance was used or the education of the parents, which is also asked on the certificate of live birth. (1)

In 2013, the National Institutes of Health invested approximately $186 million in research on ASD. No. 3 out of 4 objectives read: “identifying potential risk factors that may be linked to the cause(s) of ASD.” The other 3 objectives were about early intervention and treatments. (1)

With the recent passage of the 2014 Autism CARES Act, more data collection for research will be required; however, existing CDC programs following these disabilities will continue to take prevalence statistics and appear to have no plan to increase or collect data at birth. (2)

“With this new round of funding, the CDC will invest over $20 million over four years to enhance tracking at eight sites and launch two new sites in its Autism and Developmental Disabilities Monitoring Network (ADDM). All ten sites will track the number of school-aged children receiving autism services. Six sites will also track autism among preschoolers. Autism can be reliably diagnosed by age 2, however, the average age of diagnosis in the United States remained stalled at 4.5 years, as of last year’s CDC estimate.“ (3)

The “National Autism Monitoring Network will look for advances in early diagnosis, with special attention to new criteria for diagnosis and will conduct research aimed at better understanding why prevalence is increased.“ (4)

Much of what CDC collects is also collected similarly by the department of education; more complete prevalence statistics are already available as the department of education collects extensive data on autism by year, age, and state.

It is redundant to collect more prevalence statistics duplicating other government collected data. We understand we may never be able to collect all the data, but for the abnormal birth, the lack of comprehensive data collected at birth is marginalizing human life by failing to concentrate on data collection resources for prevention.

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) U.S. Department of Health and Human Services, “Our Commitment to Supporting Individuals on the Autism Spectrum and their Families,” (last updated March 27 2014) pp.7 <http://www.hhs.gov/autism/factsheet_autism_support.html> (31 March 2015).

(2) Taryn Mackenzie Williams, “President Obama Signs Bill to Support the Needs of People with Autism.” The White House Blog (August 11, 2014).

(3) CDC Expands National Autism Monitoring to Include Preschoolers, <http://www.autismspeaks.org/science/science-news/cdc-expands-national-autism-monitoring-include-preschoolers> (07 January 2015).

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