The Definitions Working Group (DWG), currently co-chaired by Steve Colan MD and Henry Walters MD, was formed as a sub-committee of the ISNPCHD during the 2007 meeting of the ISNPCHD in Tokyo, Japan. The long-term mission of the DWG is to create concise and scientifically accurate definitions for the diagnostic and procedural terms of the IPCCC. This work was initiated at the subsequent two meetings of the ISNPCHD-DWG in 2008 and 2009. At the 2010 meeting, the DWG accepted the invitation of the World Health Organization (WHO) to create a subset of paediatric and congenital heart disease (P&CHD) terms (derived from the IPCCC) to be used in the newest version of the WHO’s International Classification of Diseases, ICD-11. This consists of a hierarchy of fundamental P&CHD diagnostic terms along with their definitions, synonyms and abbreviations. This invitation from the WHO provides the DWG an important opportunity to substantially influence the content and organization of P&CHD terms within ICD-11. The DWG has worked steadily on this ICD-11 project at its annual meetings from 2010-2016.
With the broad-based input of its international members, the DWG has now completed a hierarchy of approximately 316 congenital and 135 acquired terms representing P&CHD under the overall heading of “Congenital anomaly of heart and/or great vessels and related acquired abnormality”. Ratified definitions have now been created for all 316 congenital terms and for 131 of the 140 acquired terms. All of these terms, their hierarchical organization and their definitions are thoroughly discussed, debated, revised and, finally, ratified by the DWG at its annual meetings.
After completing the WHO ICD-11 project, the DWG will then move on to completing its original mission of defining the remaining diagnostic and procedural terms of the IPCCC. Though this is an ambitious mission, the members of the ISNPCHD-DWG share the vision that one of the fundamental tools for quality improvement is a comprehensive, accurate, organized, well-defined, and well-illustrated common international language for P&CHD.