Building Standardised Phenotype Data Collection Toolkits for African Research

Abstract: Published paper: Developing Clinical Phenoty… Modern biomedical research is characterised by its high-throughput and interdisciplinary nature. Multi-project and consortium-based collaborations requiring meaningful analysis of multiple heterogeneous phenotypic datasets have become the norm; however, such analysis remains a challenge in many regions across the world. An increasing number of data harmonisation efforts are being undertaken by multi-study collaborations through either prospective standardised phenotype data collection or retrospective phenotype harmonisation. The Human Heredity and Health in Africa (H3Africa) consortium aimed to facilitate phenotype standardisation by promoting the use of existing data collection standards, adapting existing data collection standards for appropriate use in low- and middle-income regions such as Africa, and developing novel data collection standards where relevant gaps were identified. These data collection kits built in REDCap (a secure web application for building and managing online surveys and databases), facilitate phenotype standardisation and harmonisation not only in Africa but also across the larger research community. In keeping with the inclusive methods originally employed to build and validate these toolkits for use in the African context, AfriGen-D is taking forward their complete translation into commonly used African languages for swift uptake and adoption in diverse countries across the continent and globe. Learning Objectives: ·        Building data collection standards can only work if done with domain experts and in the right community for the users ·        Build your tools to be multi-lingual and multi-culturally appropriate ·        Focus on your collaboration objectives to guide technology use ·        Use accessible software where possible ·        Grow a supporting community of users