Lauren Penrose
Pronouns: she/her
Research Mentor(s): David Sandberg
Co-Presenter:
Research Mentor School/College/Department: Pediatrics / Medicine
Presentation Date: April 20
Presentation Type: Poster
Session: Session 1 – 10am – 10:50am
Room: League Ballroom
Authors: , , Lauren Penrose, Zoe Lapham, David Sandberg
Presenter: 49
Abstract
Differences/disorders of sex development (DSD) refer to rare congenital conditions in which the development of chromosomal, gonadal, or anatomic sex is atypical. In DSD, questions about sex and gender of rearing can arise for parents at the time of birth and, later, for the children themselves as their own conceptualization of gender and gender identity evolve. The psychosocial and medical management of children with DSD are understudied though it is essential for their psychological and physical health and wellbeing. I have been working on research that supports data management for DSD patients and highlights the importance of keeping patient registries especially for underrepresented populations. Clinical research often overlooks niche populations such as individuals with DSD; however, it is vital for providers, families, and patients (DSD stakeholders) to have organized and recent medical records. Michigan Medicine participates in the DSD-Translational Research Network (DSD-TRN), a fourteen-site consortium of pediatric medical centers. Together, we are working on creating the best care approach for each patient and how to document their individual needs. When working with a less-studied population, it is critical that we utilize an appropriate database to drive meaningful research and clinical care changes. REDCap (Research Electronic Data Capture) is an electronic database for translational clinical healthcare research that promotes reliable research. My work evaluates the utility of REDCap in offering organization and analysis of psychosocial response data from the DSD-TRN University of Michigan research site. I examined patient records and used statistical tests to compare the completion of administered psychosocial forms in REDCap (2021/2022) versus paper forms (2016). In addition, I obtained qualitative data about the personal experiences of researchers at Michigan Medicine working with REDCap through a questionnaire. On a broader scale with this work, patients and their families can receive more evidence-based healthcare regarding their DSD, while supporting the patient’s ability to make fully informed decisions regarding their care, and encourage a full range of expression. Finally, this research encourages DSD stakeholders to appreciate the complexity of sex and gender and help us shift towards a more fluid understanding and celebration of differences.
Biomedical Sciences
