1. NATIONAL CANCER REGISTRY IRELAND

2. Basic registration dataset Patient dataCancer dataTreatment and follow up registration numbertumour idtreatment id year of registrationtopography code(ICDO3)treatment code (ICD9CM) user codemorphology code(ICDO3)oncology drug (from 2012) firstnamedate of incidencedate of commencement firstname2age at incidencetopography code (ICDO3) surnamegradehospital id date of birthmethod of diagnosismrn year of birthmicroscopic verification of diagnosisconsultant id sexmethod of presentationadmission type main addresssidepurpose of treatment whose occupationpathology labMetastasis data SOC codepathologist idmetastasis id occupational statushistology lab numbertopography code (ICDO3) marital statushistology datedate of diagnosis of metastases smokerstaging site deadtumour size ctumour size p date of deathclinical stage Tpath stage T cause of deathclinical stage Npath stage N death certificate numberclinical stage Mpath stage M date of deathTNM summary underlying cause of deathconfidence T other conditions presentconfidence N place of deathconfidence M residual disease first recurrence date

3. Sources of data for the project  Basic registration dataset  Hospital discharge records (public hospitals only)  Diagnoses and procedures  Histopathology records (online in all hospitals)  Imaging (online in all hospitals)  X-rays, scans, MRI etc  Patient medical notes (limited availability)  Targetted therapy, immunotherapy, serum markers

4. General findings 1. Almost all of the items are currently registered by us. 2. For some items which we do not register, we will need to go back to the patient record. These are often not available more than a year after the patient was discharged. 3. Precise definitions are required for some items e.g. which drugs are targetted therapy.

5. Queries and comments

6. GEP NETs 1. Invasive only? 2. How do we grade cancers where the grading given is inconsistent with the schema ? 3. Do we include carcinoid of appendix? 4. Items not currently collected a. Re-operation—only if cancer is present in the operation specimen; possibly retrievable in other ways. b. Targeted therapy—use, date,hospital (need definition) c. Immunotherapy—date, use, hospital (need definition) These are retrievable in theory but availability of notes varies.

7. Limb sarcomas 1. Include C47.1 C47.2 M-9540/3 (neurilemmoma)? 2. It does not seem from examining pathology reports that Irish pathologists use Coindre/Trojani system 3. Biopsy revision requested—what does this mean? 4. Diagnosis changed after review Not available on database; final diagnosis only. May be possible to retrieve some information. a. Histological verification post surgery b. Difficult to interpret what this means—change in morphology code?. 5. Items not currently collected 6. Targeted therapy-use, date,hospital a. Other therapy—not in the detail specified. Definition incorrect (hospital of radiotherapy) b. All items are retrievable in theory but availability of notes varies.

8. Testis 1. Why so many morphologies? 2. Items not currently collected a. Serum markers b. Active surveillance: Difficult to pick up; may be biassed. Hospital of active surveillance is difficult to define. c. Immunotherapy d. Recurrence (some unsystematic data)

9. Head and neck 1. C14.0 and C14.8 not included? 2. Pattern of invasion? What does this mean 3. Biopsy review—what does this mean? 4. Items not currently collected a. HPV (only one code should be here, not 7 & 8) b. Radiotherapy type—only from 1/1/2011

10. Thank you