Research Committee Study

NASPAG Research Committee Multicenter PCOS Study

In 2010, NASPAG members interested in PCOS research began meeting and phone conferencing to lay groundwork for NASPAG’s first multicenter research initiative. Led by Andrea Bonny and Veronica Gomez-Lobo, the group identified the growing controversy over adolescent PCOS diagnostic criteria as fertile ground for our organization’s initial research efforts. Research committee members surveyed NASPAG regarding individual member physicians’ approaches to PCOS diagnosis and treatment, publishing the results of that survey in Journal of Pediatric and Adolescent Gynecology.1

Having found significant variability in how NASPAG members were interpreting diagnostic criteria, the Research Committee began designing a multicenter study to analyze the validity/utility of biochemical, sonographic, and clinical features in diagnosing adolescent PCOS. A PCOS Data Dictionary was created, and the writing of an R03 grant to test the feasibility of multicenter data collection, sharing, and interpretation began. The Committee hopes to launch four sites in collection of demographic, clinical, laboratory, and sonographic data of subjects and controls in early 2014, with the plan to gradually add more sites across North America. The multicenter design is being modeled after the collaborative research group for pediatric nephrology, which began regionally but is now a global center for collaborative pediatric nephrology research.

The initial four sites and NASPAG collaborators will be Nationwide Children’s Hospital (Andrea Bonny), University of Wisconsin American Family Children’s Hospital (Ellen Connor), Children’s Hospital of Pittsburgh (Gina Sucato), and Children’s National Medical Center/MedStar Washington Hospital Center (Veronica Gomez-Lobo). The collaborators are entering into a data-sharing agreement for central data collection, including ultrasonography, and will store and run pertinent laboratory studies centrally. Individual phenotypes of adolescents diagnosed with PCOS will be compared for significance of biochemical, anthropometric, and historical findings in each compared to the other phenotypes and to controls.

While our initial intention is to clarify diagnosis of adolescent PCOS, we also intend to use this first collaborative effort as a model for future NASPAG multicenter collaborative studies of other pediatric and adolescent gynecology topics. Stay tuned for updates.

1Bonny AE, Appelbaum H, Connor EL, Cromer B, Divasta A, et al. Clinical variability in approaches to polycystic ovary syndrome. J PediatrAdolescGynecol 2012;25(4):259-261.