International Health Terminology Standards Development Organization (IHTSDO) International Pathology and Laboratory Medicine Special Interest Group (IPaLM SIG) Toronto, October 18, 2010 Raj Dash, Chair

Agenda - Morning 0900 – 0915 Introductions and Overview of Agenda - Dash 0915 – 0940 Review of April 2010 Copenhagen Action Items – Dash 0940 – 1000 Overview of Italian Society of Pathology Effort - Gongolo 1000 – 1030 Overview of Request Submission from Spain – Reynoso 1030 – 1100 Break 1100 – 1130 Overview of Existing Molecular Terminologies – Carter 1130 – 1230 Open Discussion - Molecular Terminology Naming Conventions 1230 – 1330Lunch

Agenda - Afternoon 1330Meeting adjourned early 1330 – 1430Strategies for Future Work (with possible smaller group discussions) - Dash 1430 – 1500Draft IPALM SIG Report - Dash 1500 – 1530Break 1530 – 1600Review IPALM SIG Report - Dash 1600 – 1630 Next Meeting Planning - Dash 1630 – 1730Closing Plenary Session – Working Group Reports

Italian Healthcare Terminology Effort Dr. Francesco Gongolo Presentation will be posted onto collaborative site. WHO ICD 11 update with timeline for implementation spanning – May2010 alpha release – May 2011 beta release – Period of review to follow – Moving from usual list of codes to formalized knowledge representations NAP – nomenclature of anatomic pathology planned to converge with SNOMED CT Italian Society of Pathologists under Dr. Bondi’s leadership have been involved in moving terminology efforts forward in Italy The Italian Health Ministry may potentially be approached through Dr. Bondi and/or Dr. Gongolo with aid of IHTSDO leadership for inclusion

Overview of Request Submission (Spain) – Guillermo Reynoso Presentation deferred pending further interactions with Spain development team Consistent naming policies and consistent maintenance is important Update provided in terms of availability of tooling for the future – Workbench requires some time to be useful to non- technical / non-engineers – Workbench requires modeling experience – These will be issues for deployment to IPALM SIG members

Overview of Molecular Terminology Nomenclature Dr. Alexis Carter Presentation uploaded to the collaborative space – Nomenclature of gene names (HUGO) – Nomenclature for sequence variations (HGVS) – Nomenclature for factors of the HLA System (IMGT) – International System for Human Cytogenetic Nomenclature 2009 (ISCN) IPALM SIG will ask for feedback from community in regards to these standards IPALM SIG will propose nomenclature standards for IHTSDO based on published recommendations in this space

IPALM SIG Update Six month status update review (word document published onto collaborative site) Review of action items from April meeting – IPALM SIG awaits tooling for distributed content contribution and mapping to existing molecular standards – IPALM SIG chair, Raj Dash, developing gap analysis software tool for open use

IPALM SIG - Work Plan 2010 In terms of a quarterly timeframe, the following should be accomplished: – Quarter 1: Communications submitted Feedback distributed – Quarter 2: Workforce defined Infrastructure established (tools, etc) – Quarter 3: Gap analysis completed – Quarter 4: Content development

Invitation Letters Sent to Following Radiological Society of North America Semantically Yours IHE Lab Domain Association for Molecular Pathology NAACCR IBM Research World Health Organization European Cooperation in Science and Technology International Federation of Clinical Chemistry and Laboratory Medicine International Academy of Pathology World Association of Societies of Pathology and Laboratory Medicine Clinical Bioinformatics Ontology™ International Society of Heart and Lung Transplantation (ISHLT) SEAP (Spanish AP) American Society of Transplant Surgeons American Society for Blood and Marrow Transplantation American Society for Transplantation American Society for Histocompatibility and Immunogenetics (ASHI)

Future Work Plan Smaller groups to operationalize efforts moving forward – Data contributors (immediate need) – Data reviewers (immediate need) – Modelers (CAP can support) – Tooling and Informatics support (future?) – Liaisons to other organizations (not mutually exclusive!)

Additional Action Items – Q3-4 Publish all presentations onto collaborative site (completed) Ask for permission to publish reporting standards article onto collaborative space: Gulley ML, et al. Arch Pathol Lab Med. 2007;131(6): Publish draft recommendation for use of existing nomenclature standards by IHTSDO (30 days) Draft letter from IPALM SIG to ask for feedback on draft recommendation (60 days) Collate feedback and submit to I&I committee as a formal recommendation from IPALM SIG (120 days)

Acknowledgements Thanks to all participants – Attendee List: Raj Dash (chair), Stan Huff (co-chair LOINC, IHTSDO USA/NLM rep), Lorie Carey (MT working with LOINC with Ca Health Infoway), Paul Amos (Clinical terminologist at UK standards Board), Mike Smith (pathologist, SNOMED CT clinical editor), Ian Green (UK terminology Center and Term author), Francesco Gongola (Regional Health Authority in Italy), Alexis Carter (remote participation, Director of Pathology Informatics and Molecular Pathologist Emory University), Spain representatives x 2 (remote participation, names to be discerned) Special thanks to WASPaLM and the CAP for sponsoring this activity Final thanks to Andrea Pitkus from CAP for administrative support