ENHANCING RESEARCH CAPACITY VIA DEVELOPMENTALLY APPROPRIATE ONLINE DATA COLLECTION

NCATS
ID: 1R43TR000982-01A1
PI: MELISSA DEROSIER
TERM: 05/14 – 11/14

A central aspect of any research project is data collection, and within the clinical, behavioral, and social fields of study, data collection is traditionally carried out in-person, by telephone, or through the mail and often involves research participants completing one or more survey questionnaires via paper-and-pencil forms. Recent technology advances have yielded numerous online data collection systems (DCS) that are capable of automating the data collection process via web and mobile applications. As a result, online methods have become increasingly prevalent and evidence indicates online data collection offers significant advantages over traditional methods. Unfortunately, however, none of the current DCS offer developmentally appropriate tools specifically for collecting survey responses with children.

Rather than apply the same online data collection formula for adults to children, the proposed child-centric DCS will be the first online DCS to provide a selection of developmentally appropriate game-like user interfaces (UI) with built in accessibility tools (e.g., text-to-speech questions and response choices with audio controls) to maximize both engagement and usability for children. Completion of this SBIR project will reinforce 3C’s position as a leader in the provision of innovative technology products for researchers and place 3C at a marked competitive advantage. This Phase I project will accomplish three specific aims: 1) create prototypes for the website user interface (UI) for researchers to implement and monitor data collection with children and two game-like UIs for collecting survey data with children (ages 6-12), including built in accessibility tools; 2) conduct testing with children to assess engagement, usability, and feasibility; and 3) conduct testing with researchers to assess value, innovation, feasibility, usability, and quality. We expect this project to demonstrate strong support for the proposed child-centric DCS. Findings will be used to generate the Phase II full development plan, including all needed revisions and additions. This project will yield an affordable, easy-to-use product that can be broadly applied in the service of research. By facilitating the collection of high quality data in research with children, we hope the proposed product will support translation of research findings into clinical practice, so health outcomes for children can be enhanced.

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.