Mast cell diseases in practice and research: issues and perspectives raised by patients and their recommendations to the scientific community and beyond

Abstract:

Background Since 2010, patients and physicians have collaborated to understand unmet needs of patients with mast cell diseases, incorporating mastocytosis and mast cell activation disorders, which include mast cell activation syndromes. Objective This Open Innovation in Science project aims to expand understanding of the needs of patients affected by mast cell diseases, and encourage global communication among patient advocacy groups, physicians, researchers, industry, and government. A major aim is to support the scientific community’s efforts to improve diagnosis, management, therapy, and patients’ quality of life by addressing unmet needs. Methods In collaboration with mast cell disease specialists, 13 patient advocacy groups from 12 countries and regions developed lists of top patient needs. A core team of leaders from patient advocacy groups collected and analyzed the data and proposed possible …

Año de publicación:

2022

Keywords:

Fuente:

google