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. Author manuscript; available in PMC: 2020 Jul 1.
Published in final edited form as: Haemophilia. 2019 Jul;25(4):575–580. doi: 10.1111/hae.13737

TABLE 4.

Working Group 4: design of pregnancy/birth longitudinal cohorts that leverage ‘omics’, existing phenotypic data, and in silico modelling to study FVIII immunogenicity, as well as inhibitor development and eradication

Co-chairs Deborah Brown, MD and Jill Johnsen, MD
Charge The design of prospective pregnancy/birth longitudinal cohorts that leverage multi-“omics” science, existing phenotypic data and in silico protein modelling to study FVIII immunogenicity, inhibitor development and eradication
Goals Design data capture and mechanistic studies, based on translational scientific priorities required to build precision (personalized) medicine-based
• Clinical decision-making algorithms that can be applied across the lifespan to either avoid or provoke clinical phenotype for the purpose of diagnosis and/or appropriate time-sensitive intervention, include the design of potential antenatal/neonatal interventions
• Address challenges associated with, and successful models for building lifespan/intergenerational cohorts, as well as resources and partners required
• For success, including unique challenges in sample procurement and banking
• Optimization of private-public partnerships to fund longitudinal cohorts
• Engage the patient community in longitudinal cohort participation
• Training models and opportunities engendered by novel cross-disciplinary science