NATIONAL CANCER REGISTRYIRELAND

Basic registration datasetPatient data Cancer data Treatment and follow upregistration number tumour id treatment idyear of registration topography code(ICDO3) treatment code (ICD9CM)user code morphology code(ICDO3) oncology drug (from 2012)firstname date of incidence date of commencementfirstname2 age at incidence topography code (ICDO3)surname grade hospital iddate of birth method of diagnosis mrnyear of birth microscopic verification of

diagnosisconsultant id

sex method of presentation admission typemain address side purpose of treatmentwhose occupation pathology lab Metastasis dataSOC code pathologist id metastasis idoccupational status histology lab number topography code (ICDO3)marital status histology date date of diagnosis of metastasessmoker staging sitedead tumour size c tumour size pdate of death clinical stage T path stage Tcause of death clinical stage N path stage Ndeath certificate number clinical stage M path stage Mdate of death TNM summaryunderlying cause of death confidence Tother conditions present confidence Nplace of death confidence M

residual diseasefirst recurrence date

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

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.

Queries and comments

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.

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 system3. 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.

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. Immunotherapyd. Recurrence (some unsystematic data)

Head and neck

1. C14.0 and C14.8 not included?2. Pattern of invasion? What does this

mean3. 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

Thank you