Without data collection and without a system that checks back on that data when a diagnosis is realized, how are we ever going to connect cause and effect of Developmental Disability? How are medical science and our society ever going to learn how to prevent the ever increasing number of children with disabilities without coordination of the collection of data at birth and then later in development?
The effect of brain trauma or injury at birth and resulting developmental delays and disabilities, such as Autism, ADHD, Visual problems, Cerebral Palsy and Learning Disabilities may not become apparent or are generally NOT diagnosed until a child is older, possibly 2, 3, 4, 6, 8 years of age or older, therefore the circumstances of birth can easily be overlooked. Are the records of birth still available when the child is diagnosed? Most research projects begin with the evidence of disability in the older child and must look back to the past to the circumstances of birth relying on parents’ and doctors’ memories. (1)
This gap between the entire pregnancy, birth and cause of brain development interruption and the consequential effect of developmental delay and disability becomes the difficulty to address the cause and effect of lifelong Developmental Disabilities in a meaningful way.
The CDC is working with the Danish national public health data systems on the causes of Autism. Denmark links more than 200 long-term disease registries with birth data collection systems with conditions of the newborn and then monitors them over a period of time. (2)
In addition to mandating essential information on birth certificates, linking or tracking birth and education records or monitoring disabilities could provide the tool in determining the causes of Developmental Disabilities.
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.
(1) Coleen A. Boyle, PHD, et al. “Trends in Prevalence report of Developmental Disabilities in US Children, 1997-2008.” Pediatrics Vol. 127 No. 6 June 1, 2011, pp.1034-1042. http://pediatrics.aappublications.org/content/127/6/1034.long (26 February 2013).
(2) 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) p.7 <http://www.hhs.gov/autism/factsheet_autism_support.html> (31 March 2015).