Principal Investigator: Lauro S. Halstead, MD, MPH
Co-Investigator: Suzanne Groah, MD, MPH
Database Design & Development: Inger Ljungberg, BS; Donal Lauderdale, MSE
Web Systems Design & Development: Janine Nierva (Research Intern)

Objective: Birth defects are reported to be elevated in the general population when using assistive reproductive technology (ART). We developed a Web-based international registry to collect information on children born to parents with SCI using ART to determine the health status/number of birth defects.

Design: Pre-experimental design and convenience sample.

Methods: We conducted a qualitative project to develop an Internet registry by: 1) interviewing health professionals who provide fertility counseling/services to potential parents with SCI and their partners; 2) conducting a focus group of parents with SCI; 3) identifying alternative methods to populate the registry; and 4) designing and testing a data collection instrument.

Results: We tape recorded interviews with 3 reproductive endocrinologists, 1 genetic counselor, 1 occupational therapist and 1 focus group with 3 parents with SCI. Using this information, we developed a Web-based data collection instrument to populate an international registry on the health and presence of medical abnormalities of children born to parents with SCI. This survey will be ready for confidential, secure worldwide dissemination via the web after usability and cognitive testing have been completed.

Conclusions: An increasing number of individuals with SCI are having children using ART. The Internet has made creating a worldwide secure registry feasible. We developed a data collection instrument suitable for use as a Web-based registry to determine the health status of children born of parents with SCI.