Enhancing Research Capacity via Developmentally Appropriate Online Data Collection System

NCATS
ID: 2R44TR000982-02A1
PI: MELISSA DEROSIER, ASHLEY CRAIG
TERM: 04/16 – 03/18

Data collection for clinical, behavioral, and social research has traditionally been accomplished via paper-and-pencil forms collected in-person, by telephone, or through the mail; however, recent technological advances have resulted in a multitude of online data collection systems (DCS) that deploy measures and collect data online. More than 35% of all data collection is now being conducted through online surveys. Furthermore, evidence indicates online data collection offers higher response rates, higher quality data, and substantial cost savings over traditional methods. Unfortunately, however, none of the current technology products offer developmentally appropriate tools specifically designed for collecting data with children younger than 13.

This Phase II SBIR project continued the development and testing of a child-friendly data collection system, Quest, which provides game-like user interfaces with built-in accessibility tools to maximize both engagement and usability for children and enabling researchers to design, build, and deploy developmentally appropriate surveys for children (ages 6-12). This Phase II SBIR project built on positive Phase I feedback and support to accomplish three specific aims: (1) Fully developed Quest software by finalizing user flows and interfaces, embedding recommended software features and functions, and integrating researcher and child portal components. To ensure maximum usability, we employed an iterative development model incorporating continuous feedback from children and researchers during development of the full product. (2) Conducted usability testing with children ages 6-12 who were randomly assigned to complete pediatric self-report social behavioral measures using one of three data collection methods: (a) paper-and-pencil, (b) online survey, or (c) Quest. Observational data and ratings were gathered for each method to assess participant engagement, motivation, attention, and usability. (3) Conducted pilot testing with pediatric clinical, social, and behavioral researchers randomly assigned to (a) Quest or (b) data collection as usual (DCU) conditions. Researchers completed ratings of their data collection experience with children over a 3-month period.  This project resulted in a highly innovative, affordable product that can be broadly applied in the service of clinical, behavioral, and social research and for which there is a demonstrated market need. In effect, this work supported NCATS’s Strategic Priorities to build research capacity by addressing the developmental challenges of data collection with children and supporting researchers’ capacity to collect high quality survey data with children, which in turn, would support efforts to translate research findings into clinical practice so that health outcomes for children can be enhanced.

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DEB CHILDRESS, PHD

Chief of Research and Learning Content

BIOGRAPHY

Dr. Childress obtained her PhD in psychology at the University of North Carolina at Chapel Hill. Prior to coming to 3C Institute, she served as a research associate and a postdoctoral fellow in the Carolina Institute for Developmental Disabilities at the University of North Carolina at Chapel Hill working on a longitudinal imaging study aimed at identifying the early markers of autism through behavioral and imaging methodologies. She has 19 years of autism research experience, during which she has examined the behavioral, personality, and cognitive characteristics of individuals with autism and their family members. Dr. Childress also has experience developing behavioral and parent report measurement tools, coordinating multi-site research studies, and collecting data from children and families. She has taught courses and seminars in general child development, autism, and cognitive development at the University of North Carolina at Chapel Hill.

Expertise

  • autism
  • early development
  • behavioral measurement
  • integrating behavioral and biological measurement

Education

  • Postdoctoral fellowship, Carolina Institute for Developmental Disabilities (Institutional NRSA-NICHD), University of North Carolina at Chapel Hill
  • PhD, developmental psychology, University of North Carolina at Chapel Hill
  • BS, psychology (minor in sociology), University of Iowa

Selected Publications

  • Elison, J. T., Wolff, J. J., Heimer, D. C., Paterson, S. J., Gu, H., Hazlett, H. C., Styner, M, Gerig, G., & Piven, J. (in press). Frontolimbic neural circuitry at 6 months predicts individual differences in joint attention at 9 months. Developmental Science.
  • Wassink, T. H., Vieland, V. J., Sheffield, V. C., Bartlett, C. W., Goedken, R., Childress, D. & Piven, J. (2008). Posterior probability of linkage analysis of autism dataset identifies linkage to chromosome 16. Psychiatric Genetics,18(2),85-91.
  • Losh, M., Childress, D., Lam K. & Piven, J. (2008). Defining key features of the broad autism phenotype: A comparison across parents of multiple- and single-incidence autism families. American Journal of Medical Genetics (Neuropsychiatric Genetics), 147B(4):424-33.
  • Wassink, T. H., Piven, J., Vieland, V. J., Jenkins, L., Frantz R., Bartlett, C. W., Goedken, R., … Sheffield, V.C. (2005). Evaluation of the chromosome 2q37.3 gene CENTG2 as an autism susceptibility gene. American Journal of Medical Genetics (Neuropsychiatric Genetics), 136, 36-44.
  • Barrett, S., Beck, J., Bernier, R., Bisson, E., Braun, T., Casavant, T., Childress, D., … Vieland, V. (1999). An autosomal genomic screen for autism. American Journal of Medical Genetics (Neuropsychiatric Genetics), 88, 609-615. doi: 10.1002/(SICI)1096-8628(19991215)88:63.0.CO;2-L
  • Piven, J., Palmer, P., Landa, R., Santangelo, S., Jacobi, D. & Childress, D. (1997). Personality and language characteristics in parents from multiple-incidence autism families. American Journal of Medical Genetics (Neuropsychiatric Genetics), 74, 398-411.
  • Piven, J., Palmer, P., Jacobi, D., Childress, D. & Arndt, S. (1997). Broader autism phenotype: Evidence from a family history study of multiple-incidence autism families. American Journal of Psychiatry, 154, 185-190.