Patient data registration number year of registration user code firstname firstname2 surname date of birth year of birth sex main address whose occupation
SOC code occupational status marital status smoker dead date of death cause of death death certificate number date of death underlying cause of death other conditions present place of death
Cancer data tumour id topography code(ICDO3) morphology code(ICDO3) date of incidence age at incidence grade method of diagnosis microscopic verification of diagnosis method of presentation side pathology lab pathologist id histology lab number histology date staging site tumour size c clinical stage T clinical stage N clinical stage M
TNM summary confidence T confidence N confidence M residual disease first recurrence date tumour size p path stage T path stage N path stage M
Treatment and follow up treatment id treatment code (ICD9CM) oncology drug (from 2012) date of commencement topography code (ICDO3) hospital id mrn consultant id admission type purpose of treatment
Metastasis data metastasis id topography code (ICDO3) date of diagnosis of metastases


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
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Patient medical notes (limited availability)

Targetted therapy, immunotherapy, serum markers

1.
2.
3.
Almost all of the items are currently registered by us.
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.
Precise definitions are required for some items e.g. which drugs are targetted therapy.

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

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

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

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