Challenges and lessons from international registries on Women's Health Issues of Thrombosis and Haemostasis

Abstract

Registries provide an important tool for data collection, particularly in context of rare conditions, or questions not amenable to investigation by means of a clinical trial. The Subcommittee on Women's Health in Thrombosis and Hemostasis (WHITH); one of 20 Scientific and Standardization Subcommittees (SSCs) of the International Society on Thrombosis and Hemostasis (ISTH) has supported 12 registries related to WHITH since 2016. Despite many successes, some challenges have been observed. In this report, we attempt to review the basic tenets of value in developing a registry, discuss observed challenges, share lessons learned, and finally present our views on a potential formula for success in developing and maintaining a registry in WHITH.

Keywords

• Registry
• Women's health
• Ethics
• Data collection
• Haemostasis