Abstract
Abstract Introduction Despite a prevalence of nearly 1 in 10 men, male infertility remains incompletely understood and half of all diagnoses remain idiopathic despite extensive diagnostic workup. Even at large institutions, the rarity of many subpopulations of infertile men limits sample size and data quality. Objective We initiated an integrated multi-institutional research consortium to better under the pathogenesis of male infertility and improve our ability to conduct diverse, clinically relevant evidence-based research in this area. Methods A standardized 400-point database with advanced branching logic and automated calculation capabilities was generated and iteratively optimized using the HIPAA-compliant REDCap platform. Individual instruments were produced to capture demographic information, medical history, physical examination findings, lab and semen testing results, procedural and surgical data, and fertility outcomes. The database can be rapidly deployed at new institutions following completion of a standard data use agreement and is internally maintained by site investigators and exported at regular intervals for consortium-wide aggregation in a de-identified fashion. Results With the primary goal of pursuing collaborative and democratic research, the IRB-approved MOBYUS (Male Organ Biology Yielding United Science) consortium currently consists of at least twelve large US-based academic medical institutions. Data collection is ongoing with >4000 patients included to date with new projects are identified at regular monthly virtual meetings. The group has successfully published three proof-of-principle manuscripts to date. Conclusions As the field of urology and its subspecialties move towards collaboration and data-driven management, male infertility and its associated rare diseases may benefit from a decentralized network capable of leveraging large data sets. The MOBYUS Consortium aims to accomplish this goal for male infertility patients with an emphasis on generating the best possible clinical data for the patients suffering from this difficult condition. The collaborative approach adopted by the MOBYUS Consortium has the capability of rapidly generating a robust cohort for practice-shaping studies. Disclosure Any of the authors act as a consultant, employee or shareholder of an industry for: Fellow Health (Dr. David Shin, Stockholder); Posterity Health (Dr. Akanksha Mehta, Advisory Board Member); Boston Scientific Corporation (Dr. Marah Hehemann, Consultant); Coloplast Corporation (Dr. Marah Hehemann, Consultant); Endo International (Dr. Marah Hehemann, Speaker).
Published Version
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