RARECARENet project High-resolution study in the Finnish Cancer Registry Maarit Leinonen Chief Medical Officer Finnish Cancer Registry, Helsinki

Maarit Leinonen In parallel public and private sector Cancer treatments in the first line mainly in public sector 20 hospital districts + Åland - population range from to ~1.6 million inhabitants - shall organize and provide special care for inhabitants - central hospital and local hospitals within the area 5 university hospital districts - population about a million - most demanding special care Finnish Health Care system

Maarit Leinonen Institute for Statistical and Epidemiological Cancer Research unit of the Cancer Society of Finland cancer register - population-based and nationwide database - owned by the National Institute for Health and Welfare (THL) - includes 2 mass screening registries collect, refine, control quality, provide services, deliver data personnel about 40 Finnish Cancer Registry (FCR)

Maarit Leinonen founded in 1952 by Cancer Society of Finland (CSF) Board of Health’s official statistics (THL) funding entirely by CSF till 1970 Previously 50% funding for 'routine' registration by RAY (not-for- profit gambling company in Finland) 2011 state budget - Ministry - THL 50% 2013 about 50% funding also for the Mass Screening Registry FCR

Maarit Leinonen Act on the National Institute for Health and Welfare (THL) -Institution must evaluate and follow population health and welfare, risk factors, prevention etc. -Institution must maintain registers and produce statistics Act on National Health Care Registers -data is confidential -THL can give permission to use the data -Data utilization must follow: Personal Data Act, Act on the Status and Rights of Patients, Medical Research Act, Act on the Medical Use of Human Organs and Tissues… FCR

Maarit Leinonen passive data collection notifications obligatory since 1961 (special legislation) notifications from - physicians, hospitals - laboratories - death certificates - mass screening units cancer data is collected and compiled in the FCR - three registration clerks and three registration assistants coding FCR

Maarit Leinonen FCR own database -routine variables (ID, date of birth, date of diagnosis, topo, morfo, own stage variable, death, emigration) -additional information collected, saved but not coded (e.g. hospital of diagnosis, hospital of tretament, chemotherapy regimens, irradiation dose, TNM) Care Registers for Health Care (hospital discharge register) -data on all hospitalization and treatments given for rare cancer patients based ICD-10 code of cancer diagnosis patient records (?) -full PAD reports -more detailed data on different treatments, order of treatments and type of hospital giving treatment Data sources

Maarit Leinonen open access to tabulated data (upon request, data provision only after acceptance by Chief Medical Officer) individual level data can only be used for statistics or research (with permission from THL), not e.g. for decision making for a patient very good legal basis (special legislation) own research (incl. linkages to other registries) collaboration with outside groups (agreement on research co-operation and maintenance of the personal data file required) consultant in design and analysis FCR

Maarit Leinonen new cancer diagnoses basaliomas clinical notifications: sources of which e-notifications only 10% laboratory notifications: approx. sources 45 of which e-notifications 100% death certificates: (cancer deaths ) 100% follow-up for population data (death, emigration) through Population Registry database contains 1.2M cancers (1M patients), completeness > 99% FCR statistics from year 2011

Maarit Leinonen Problems in piloting ACCESS ID; fixed number in others than GEPNETs form Gender; by protocol 0=female, 1=male but in ACCESS 1 or 2 6th digit of morphology code? Only 5 digits in the FCR -GEPNET, well-differentiated functioning endocrine tumour of pancreas (8152/3), preferred morphology 8240/1? Surgery, resection, chemo etc. -by protocol generally 0=no, 1=yes but in ACCESS 0, 1 or 2 Retroperitoneal lymph node dissection (testis) –missing from the protocol, values 0, 1 or 2