Crossmapping the “Short Lists”

The “Short Lists” of the European Paediatric Cardiac Code¹ and the International Congenital Heart Surgery Nomenclature and Database Project² were bidirectionally crossmapped by the Executive of the Nomenclature Working Group, made up of Marie J. Béland, Rodney C. G. Franklin, Jeffrey P. Jacobs, and Christo I. Tchervenkov. This work resulted in the publication of the two-way crossmap in 2002.^{4, 5}

The United Kingdom Central Cardiac Audit Database collects congenital heart surgery outcome data using the Short List established by the Association of European Paediatric Cardiology, also known as the European Paediatric Cardiac Code. The European Association for Cardio-thoracic Surgery Database collects data relating to the outcomes of surgery for congenital cardiac malformations using the Short List established by the International Congenital Heart Surgery Nomenclature and Database Project. The bidirectional crossmap between these two short lists will permit centres or surgeons coding in either system to submit data to both registries with one institutional database. Efforts are currently underway by the United Kingdom Central Cardiac Audit Database to facilitate this process, which would represent the first multi-institutional clinical application of the crossmaps.

Crossmapping the “Long Lists”

The crossmapping of the “Long Lists” is currently being carried out by the Nomenclature Working Group at semi-annual meetings. Prior to each meeting, the executive members of the group prepare an agenda listing the lesions to be reviewed. The lesions are selected from the table of contents of the International Congenital Heart Surgery Nomenclature and Database Project.² A member of the Working Group is assigned a lesion to review, and is expected to present the pertinent related nomenclatures, highlighting synonymous terms, and/or any controversies that may exist among the schemes for classification already extant. After each presentation to the group, the entries from the long list of the International Congenital Heart Surgery Nomenclature and Database Project are crossmapped one by one to equivalent terms from the European Paediatric Cardiac Code. If there is no equivalent term, one is added, along with a numeric code conforming to the method of numerical codification of the European Paediatric Cardiac Code. The process of crossmapping is then carried out in the reverse direction, such that each entry from the long list of the European Paediatric Cardiac Code is reviewed, and its equivalency is sought on the list of the International Congenital Heart Surgery Nomenclature and Database Project. Omissions to the latter list are then added.

During the process of bidirectional crossmapping between the “Long Lists”, additional entries may be suggested from the collective expertise of the members of the Nomenclature Working Group, including terms that appear in the Nomenclature Tree of the Canadian Pediatric Cardiology Association, as yet unpublished, and the Fyler codes from Boston, also unpublished.

Each meeting of the Working Group begins with a session for the detailed review of lesions discussed at previous meetings. This half-day session is entitled “Omissions and Errors”. Its purpose is to have a second look at lesions already crossmapped, so as to ensure the completeness and accuracy of the process. Lesions and related procedures discussed during the first four meetings of the group are shown in Table 2. Through this elaborate and collaborative effort, we are meticulously constructing the International Paediatric and Congenital Cardiac Code.

Table 2. Lesions and related procedures reviewed to date and to be reviewed.

Completion of the crossmap of congenital heart disease and related procedures

We expect to have crossmapped, in bidirectional fashion, the remaining major cardiac lesions by September, 2005. Several challenging lesions have yet to be discussed, including “functionally single ventricle” and “double outlet right ventricle” (Table 2).

Ensuring global understanding of, and support for, The International Nomenclature Project

It is planned that, during 2004, all of the main national and continental organizations with responsibilities for children and adults with congenital heart disease will be contacted by the International Nomenclature Committee, informing them formally of our ongoing project. It is hoped that the aims of the International Nomenclature Committee, with its Working Group, will be both endorsed and supported, and that this endorsement will then be cascaded down to the individual members of these various bodies.

Obtaining further funding

Funding for the first four meetings of the Nomenclature Working Group was generously provided, in part, by the Canadian Institutes of Health Research, the Heart and Stroke Foundation of Canada, and the Montreal Children's Hospital Foundation. Additional funding will be sought for the support of future meetings.

Cooperation and integration with other international projects relating to nomenclature

Our group is aware that the Systematized Nomenclature of Medicine Clinical Terms, also known as the SNOMED CT project, which details terms with a numerical coding system from across all medical specialties, has major sections on paediatric cardiology and cardiac surgery. This system was originally developed by the College of American Pathologists,⁶ and has more recently amalgamated with the Clinical Terms Version 3 developed in the United Kingdom, and formally known as the Read coding system, with an aim to become an integral part of the electronic patient record on both sides of the Atlantic.⁷ The Working Group plans to link with the further development of this important system so as to have the final International Paediatric and Congenital Cardiac Code integrated into the Systematized Nomenclature of Medicine Clinical Terms.

Organization of the Second Summit

The Second International Summit on Nomenclature for Paediatric and Congenital Heart Disease will be organized by the Working Group, and will be held during the 4th World Congress of Pediatric Cardiology and Cardiac Surgery in Buenos Aires, Argentina. This will take place from September 18–22, 2005. It is anticipated that this will be the launch of the International Paediatric and Congenital Cardiac Code, a global venture to harmonize the various disparate systems for coding and nomenclature that exist throughout the world. We expect that this will enable transcontinental cooperative studies further to advance the fields of paediatric cardiology and cardiac surgery.