NCD Letter to National Children's Study about the Design of the National Children’s Study and Implications for the Generalizability of Results

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July 31, 2014

Steven Hirschfeld, MD, PhD
Director
National Children's Study
NICHD, NIH, HHS
6100 Executive Boulevard, Suite 3A01
Bethesda, MD 20892-7510

Dear Dr. Hirschfeld,

I am writing on behalf of the National Council on Disability (NCD), an independent federal agency charged to advise the President, Congress, and other federal agencies regarding laws, policies, practices, and procedures that affect people with disabilities. 

NCD reviewed the National Children’s Study (NCS) program office’s materials provided to members of the Federal Consortium. This includes the description of proposed methods for the main study posted in August 2013 and the assessment (advanced copy) in June 2014 by the Panel on the Design of the National Children’s Study and Implications for the Generalizability of Results. NCD applauds the potential that the NCS’s long-term study of children’s health in the United States could contribute to the evidence-based data available to modern society in medical, social, and psychological fields.

We would like to meet with you as the NCS director and key staff before the end of September 2014.  In the interest of the disability community, we would like to ensure the study result is reliable and valid to inform decision makers for people with disabilities.  NCD’s major concerns are about the: (1) definition of health used for the NCS accounting people with disabilities; (2) accessibility for children and parents with disabilities in sampling stage; and (3) excepted impact of the study results in the disability community.

Among some suggested questions for discussion during the NCS and the NCD meeting(s) are these: Compared to the CDC definition, how does the NCS define the term “health”?  How does the NCS provide outreach to parents with disabilities and children with disabilities for sampling? How does the research method ensure accessibility for people with disabilities? How do the research and evaluation teams utilize disability specialists? Is there a disability specialist in the planning, design and research team? Who will benefit from this study? How can the study maximize benefits for the disability community? What is included in the study design regarding the impacts of the study results in the disability community (e.g. genetic selection)?

Today, about 56.7 million people, nearly 1 in 5 people have a disability in the USA[1] and disability is considered as a cross-cutting issue. A study indicated that the gap in perspectives on life with disabilities between health professionals without disabilities and people with disabilities is consistent[2].  In the description of proposed methods for the main study posted in August 2013 and the assessment published in June 2014, assessment of diverse population and health disparities are mentioned but not address about disability and how to include people with disabilities in the research. [3]

NCD stands ready to assist the NCS program office to make the NCS study beneficial for all children in America, including children and parents with disabilities. We are available to discuss these matters at your earliest convenience. Please contact me through our Policy Team in NCD’s office at (202)272-2004.

 

Sincerely,

Jeff Rosen
Chairperson

 




[1] US Census Bureau (July, 2012). Americans with Disabilities: 2010. Retrieved fromhttp://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html

[2] National Council on Disability. (2012). Rocking the Cradle: Ensuring the Rights of Persons with Disabilities and Their Children. pp.252-257. Retrieved from /publications/2012/Sep272012

[3] The National Children’s Study: Description of Proposed Methods for the Main Study. (Aug, 2013). pp.19