Encyclopedia of Autism Spectrum Disorders

Living Edition
| Editors: Fred R. Volkmar

Caregiver Consent to a Pediatric Neurodevelopmental Research Registry

Living reference work entry
DOI: https://doi.org/10.1007/978-1-4614-6435-8_102434-1


There has been a historical lag in the development of evidenced-based interventions for youth with neurodevelopmental disorders (NDD), including those with autism spectrum disorder (ASD). One well-known barrier to the development of empirically sound interventions is research recruitment. Problems with study recruitment and retention can result in the delay and/or termination of intervention studies. This methodological problem can also result in the selection of study participants who are not representative of the target population, leading to biased study estimates. Recruitment of youth with NDD can be particularly challenging, when compared to the neurotypical population, since the caregiver will have to simultaneously manage the child’s extensive healthcare needs alongside participating in a research protocol.

One potential solution to improve recruitment to NDD studies is through the use of research registries. There are many types of registries, including national or...

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References and Readings

  1. Bonevski, B., Randell, M., Paul, C., Chapman, K., Twyman, L., Bryant, J., … & Hughes, C. (2014). Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Medical Research Methodology, 14(1), 42.Google Scholar
  2. Cleaver, S., Ouellette-Kuntz, H., & Sakar, A. (2010). Participation in intellectual disability research: A review of 20 years of studies. Journal of Intellectual Disability Research, 54(3), 187–193.CrossRefGoogle Scholar
  3. Oliver-Africano, P., Dickens, S., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., … & Bhaumik, S. (2010). Overcoming the barriers experienced in conducting a medication trial in adults with aggressive challenging behaviour and intellectual disabilities. Journal of Intellectual Disability Research, 54(1), 17–25.Google Scholar

Authors and Affiliations

  1. 1.Department of Mental HealthJohns Hopkins Bloomberg School of Public Health, Kennedy Krieger Institute’s Center for Autism and Related DisordersBaltimoreUSA