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1 National Cancer Registry Database in Taiwan Chun-Ju Chiang National Taiwan Cancer Registry Center and Institute of Epidemiology and Preventive Medicine, National Taiwan University

2 TOPIC I: Introduction of Taiwan Cancer Registry

Overview of Cancer Registry System in Taiwan T H P A Health Promotion

Audit Quality Accreditation Data Collection & Management Audit data quality

Society of Cancer Registry Short Form Database (180+ reporting hospitals) Long

3 Overview of Cancer Registry System in Taiwan T H P A Health Promotion Administration, Ministry of Health and Welfare Policy Making Data Monitoring Audit Quality Accreditation Data Collection & Management Audit data quality Analysis Academic use Cancer Registry Center (National Taiwan University) Taiwan Society of Cancer Registry Short Form Database (180+ reporting hospitals) Long Form Database (90+ reporting hospitals) Training Q & A registrars certification Improve registry quality 3

4 Taiwan Cancer Registry: Phase I ( ) Hospitals ( 50 beds) report in situ and invasive newly incident cancer cases within 1 year after their diagnosis Citizens with Taiwan s ID card can be reported to TCR 20 items (short form) are reported Items required:case demography, diagnostic age and methods, site and morphology, summary of treatment and death MOHW contracts out TCR to operate since Taipei Veterans General Hospital run by MOHW National Taiwan University (1 st Chien-Jen Chen, 2 nd Mei-Shu Lai, 3 rd Wen-Chung Lee) The quality of TCR has a speed breakthrough since

5 Taiwan Cancer Registry: Phase II (2002-now) Cancer Control Act was promulgated in 2003 which requests MOHW to promote the cancer care quality, and hospitals to report cancer data to MOHW To know the treatment patterns, we extended reported items from 20 to 65 in 2002 and further to 95 in 2007 and to 114 in 2011, which is called long form and modified from US FORDS Items added TNM staging, detail treatment information, recurrent data 90+ hospitals submit long form information for 16 major cancers now which covered 90%+ of those cancer patients Site-specific factors (SSF) and risk factors were included in 2011 Major Risk factors including smoking, betel nut chewing, alcohol consumption, BMI SSF Information is used to develop the predictive/prognostic factors that is important for risk population and individualized medicine 5

6 Cancer Site Specific Factors (SSF) Site No. of Factors Example Head & Neck 8 I-III, IV-V, VI-VII lymph nodes Esophagus 4 PET-CT examination, MIE Stomach 3 CEA, HP infection Liver 8 AFP, fibrosis score, Child Pugh, HBV/HCV Lung 6 EGFR gene mutation Colon / Rectum 9 CEA, CRM, perineural invasion Breast 9 ER, PR, Her2 value Cervix 2 SCC value Corpus 2 ER, PR value Ovary 3 CA-125 Prostate 8 PSA, Gleason score Bladder 3 WHO/ISUP grade Leukemia / Lymphoma 9 GVHD, CMV infection 6

7 Summary of TCR Database Year of Diagnosis PHASE I PHASE II - Pilot PHEASE II - Stable PHASE II - Extended 65 items 95 items 114 items (SSF) Long Form Database REQUIRED: Cervix OPTIONAL: Oral, colon & rectum, liver, lung, breast REQUIRED: Oral, colon & rectum, liver, lung, breast, cervix (total 6 major sites) REQUIRED: ( sites) Oral, colon & rectum, liver, lung, breast, cervix ADD: ( sites) Esophagus, stomach, bladder, prostate ADD: ( sites) Salivary gland, nasopharynx, corpus, ovary, lymphoma & leukemia ADD: Larynx ( sites) AJCC staging 6 th edition ( ) AJCC staging 7 th edition hospitals hospitals hospitals hospitals 20 items 20 items 33 items 42 items Short Form Database All sites hospitals All sites (except for 6 major cancers from long-form reporting hospitals) All except for LF hospitals All sites (except for 16 major cancers from long-form reporting hospitals) All except for LF hospitals 7

Registered Case Numbers of Cancer Registry Databases L : S = 5 : 1 Case Numbers Short Form Long Form 140000 120000 100000 Pilot phase 109721 112704 106180 96909 89041 89953 122290 127702 80000 60000

8 Registered Case Numbers of Cancer Registry Databases L : S = 5 : 1 Case Numbers Short Form Long Form Pilot phase / 65 Version 33 / 95 Version 42 / 114 Version 8

9 TOPIC II: Quality Control of Cancer Registry Database

Data Collection and Management Procedure of TCR in NTU Registry Hospitals with over 50 beds Return questionable data to reconfirm Reporting cancer cases electronically, data correction, trace-back

10 Data Collection and Management Procedure of TCR in NTU Registry Hospitals with over 50 beds Return questionable data to reconfirm Reporting cancer cases electronically, data correction, trace-back cases confirmed Data Check & Corrigendum Data Linkage from profiles of Death Certificates, Catastrophic Illnesses, and Cancer Screening Program Potential cancer cases Correct data Data Input & Consolidation Data Integration Trace potential cancer cases back to registry hospitals National Cancer Registry Center 10

11 Reminder and Trace-back Procedure for Cancer Reporting CRC database Breast database Oral database Cervix database 2015 cancer screening database 2015 death certificate database TCR database 2015 Catastrophic Illnesses database Reminder lists Trace-back lists Deadline 2016/12/ /03 11

12 Criteria and Standards for Cancer Registries Certification Criterion + Gold Silver Completeness 95% 90% Passing EDITS ++ 99% 95% DCO cases +++ 3% 5% Timeliness 23 months 23 months Duplicate Reports Missing data fields % 3% + Criteria and Standards for North American Association of Central Cancer Registries, NAACCR Certification ++ A collection tool that allows standard-setters to create rules for data quality +++ Death Certificate only percentage ++++ Missing data fields include Sex, Age and County 12

13 Data Quality Indices for Taiwan Cancer Registry Subsequent to Cancer Control Act Enacted Criterion Completeness,% DCO % M/I % MV % Timeliness, months Note: DCO %: death certificate only (DCO) percentage; M/I: mortality verse incidence ratio (only included invasive cancer cases); MV%: microscopically verified percentage The Quality of Data is awarded with Gold Standard from NAACCR 13

14 Data Quality and Percentage of Missing Data for Major Items, YEAR MV % MI % DCO % ID missing % AGE missing % NOTE: No missing data for SEX and Cancer Site items during the period. 14

15 US, NPCR (42 states) DCO: 1.8% M/I: 43% MV: 93% UK, England DCO: 2.8% M/I: 59% MV: 83% South Korea DCO: 3.0% M/I: 49% MV: 82% Taiwan DCO: 0.8% M/I: 46% MV: 91% Australia, NSW DCO: 1.5% M/I: 43% MV: 90% NOTE: Data from IARC website

16 Reference & Citation 1. 國健署癌症登記年報 2. 國健署癌症登記線上互動查詢系統 3. 癌症登記中心統計分析資料 4. Incidence and survival of adult cancer patients in Taiwan, (JFMA 2016) 5. Quality assessment and improvement of nationwide cancer registration system in Taiwan (JJCO 2015) 6. Cancer Trends in Taiwan (JJCO 2010) 16

17 TOPIC III: How to Use the Cancer Registry (CR) Database?

18 Item name (example) SF LF SF LF Item name (example) Reporting hospital code Other staging system Personal identity number Other staging Clin Sex Other staging Path Date of birth Surgery Age at diagnosis Radiation Class of case Chemotherapy Date of diagnosis Hormone therapy Primary tumour site (ICD-O) Immunotherapy Laterality Transplant & Endocrine tx Histology (ICD-O) Target therapy Diagnosis confirmation Palliative care AJCC staging edition Date of initial treatment TNM Clin T Date of surgery TNM clin N Date of radiation TNM Clin M Data of chemotherapy TNM Clin stage group Date of hormone therapy TNM Path T Data of immunotherapy TNM Path N Data of target therapy TNM Path M Type & date of recurrence TNM Path stage group Vital status Surgical diagnosis & staging Date of death Size of tumour Cause of death Number of examined nodes Smoking/BetalNut/Drinking Number of positive nodes Site-Specific Factors (SSF) 18

19 Types of CR Database 癌症登記年報歸戶資料彙整檔 ( ) 提供 1979 年至最新發表年度癌症個案歸戶後之年報資料, 包含各癌症原位癌及侵襲癌個案其資料的整理包含所有長表及短表醫院申報資料, 且已去除同一個案同一癌症別, 且同一組織型態組別之重複個案有關死亡原因及死亡日期欄位, 為醫院申報當時之原始資料, 若後續個案死亡, 並不會再做更新, 故不提供此欄位資料以免造成誤解若有需要, 請直接連結全國死亡檔 NHL( 非何杰金氏淋巴瘤 ) HL( 何杰金氏淋巴瘤 ) 及 LEU( 白血病 ) 血液腫瘤個案, 必須以組織病理 (HISTOLOG 欄位 ) 作區分請注意, 若是要分析各癌症部位 (CASITE 欄位 ), 請先把 NHL HL LEU 排除後再計算組織病理 (HISTOLOG 欄位 ) 為者, 僅適用於 90 年 ( 含 ) 以前使用之代碼, 意即臨床惡性腫瘤未經顯微鏡檢證實者治療情形 (CURECOND 欄位 ) 已合併個案所有申報醫院治療狀況 2007 年以後收錄之詳細治療資訊, 請另見長短表治療欄位 TAIWAN CANCER REGISTRY 19 19

20 Types of CR Database (Cont.) 癌症登記檔短表 SF (33 欄位 )(42 欄位 ) 收錄各醫院申報年 /2011 年以後之診斷個案原始資料, 並未進行院際間相同個案同一癌症同一組織型態分組之重複個案去除癌症登記短表 33/42 欄位所包含之癌症別, 除短表醫院申報的所有癌症外, 還包含長表醫院申報 95/114 欄位癌症之外其他所有癌別, 均以 33/42 欄位申報如需分析自 1979 年診斷至最新發表年度, 且已去除院際重複之年報歸戶資料, 請申請年報歸戶檔癌症登記檔長表 TCDB (65 欄位 ) / LF (95&114 欄位 ) 收錄各醫院申報年 /2007 年以後之診斷個案原始資料, 並未進行院際間相同個案同一癌症同一組織型態分組之重複個案去除 TAIWAN CANCER REGISTRY 20 20

Manual for Cancer Registration Site and Morphology 1979-2001: ICD-O-FT (ICD

th edition 2010-2017: AJCC 7 th edition 2018+ : AJCC 8 th edition SEER

21 Manual for Cancer Registration Site and Morphology : ICD-O-FT (ICD 9) 2002-now: ICD-O-3 (ICD 10) Cancer Staging (TNM system) : AJCC 6 th edition : AJCC 7 th edition : AJCC 8 th edition SEER Multiple Primary and Histology Coding Rules T H P A TCR SF, LF and SSF Coding Manuals 21

22 Variable Definition Class of Case Cancer site & Histology (ICD-O-3) Grade / Differentiation Laterality Diagnostic confirmation AJCC TNM stage Tumor size, Regional lymph node examined/positive First course of treatment Date of the initial treatment for each therapy Refused reasons of each therapy Recurrence status (re-report 3-year & 5-year follow up data) Date of first recurrence Type of first recurrence (local / regional / distant) 22

23 Class of Case 23

Cancer Site & Histology ICD-O-FT ICD-O-3 Term 162.0 C33.9 Trachea, NOS 162.2 C34.0 Main bronchus 162.3 C34.1 Upper lobe, lung 162.4 C34.2 Middle lobe, lung (right lung only) 162.5 C34.

24 Cancer Site & Histology ICD-O-FT ICD-O-3 Term C33.9 Trachea, NOS C34.0 Main bronchus C34.1 Upper lobe, lung C34.2 Middle lobe, lung (right lung only) C34.3 Lower lobe, lung C34.8 Overlapping lesion of lung C34.9 Lung, NOS Morphology Term Squamous cell carcinoma, NOS Squamous cell carcinoma in situ, NOS Adenocarcinoma, NOS Large cell carcinoma Non-small cell carcinoma 24

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26 Question I: How to Define the Combined Stage by Clinical and Pathological Stage?

27 Stage Classifications 27

28 Comparison of AJCC 6 th vs. 7 th Ed. in Lung Cancer 28

29 術式編碼為者, 視為外院或申報醫院有進行原發部位手術例外 : 攝護腺與膀胱癌以視為有手術術前接受放療 / 化療 / 標靶治療, 視為有接受 Neoadjuvant 無合適的 (AJCC 未定義 ) 不清楚或醫師未記錄 BBB - 僅適用 AJCC 第七版個案 29

30 Pathologic Stage (Prefix/Suffix) Descriptor ( 病理分期字根 / 字首 ) 編碼標示描述 0 無無 AJCC 病理分期字根或字首之描述 1 E- 淋巴結外的 (Extranodal), 淋巴癌個案適用原發部位為結內或結外淋巴癌個案, 有侵犯至淋巴結外之淋巴癌 2 S- 脾臟 (Spleen), 淋巴癌個案適用原發部位為結內或結外淋巴癌個案, 有侵犯至脾臟之淋巴癌 3 M- 同一原發部位有多顆腫瘤診斷時同一原發部位有多顆腫瘤 4 Y- 首次治療期間或治療後進行的病理分期本編碼不適用於臨床分期 5 E&S- 淋巴結外及脾臟的淋巴癌, 淋巴癌個案適用 6 M&Y- 多原發腫瘤併首次治療期間進行之病理分期原發部位為結內或結外淋巴癌個案, 同時有侵犯淋巴結外的部位和脾臟的淋巴癌符合編碼 3 及編碼 4 9 不詳 ; 病歷上未記載分期有字根或字首之描述, 但不知何者正確 30

31 Question II: How to Deduplicate the Cases and Select the Best Cancer Stage?

32 IARC Multiple Primary Rules 1. The recognition of the existence of two or more primary cancers does NOT depend on time. 2. A primary cancer is one that originates in a primary site or tissue and is NOT an extension, nor a recurrence, nor a metastasis. 3. Only one tumor shall be recognized as arising in an organ or pair of organs or tissue. Some groups of codes are considered to be a single organ for the purposes of defining multiple tumors. These topography code groups are shown in Table 1. Neoplasms of different morphology should be regarded as multiple cancers (even if they are diagnosed simultaneously in the same site). These morphology code groups are shown in Table 2. 32

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36 Paired Sites ICD-O-3 Site C07.9 Parotid gland C08.0 Submandibular gland C08.1 Sublingual gland C09.0 Tonsillar fossa C09.1 Tonsillar pillar C09.8 Overlapping lesion of tonsil C09.9 Tonsil, NOS C30.0 Nasal cavity (excluding nasal cartilage and nasal septum) C30.1 Middle ear C31.0 Maxillary sinus C31.2 Frontal sinus C34._ Main bronchus and lung (excluding carina) C38.4 Pleura C40.0 Long bones of upper limb and scapula C40.1 Short bones of upper limb C40.2 Long bones of lower limb C40.3 Short bones of lower limb C41.3 Rib and clavicle (excluding sternum) C41.4 Pelvic bones (excluding sacrum, coccyx, and symphysis pubis) C44.1 Skin of eyelid C44.2 Skin of external ear C44.3 Skin of other and unspecified parts of face C44.5 Skin of trunk C44.6 Skin of upper limb and shoulder C44.7 Skin of lower limb and hip C47.1 Peripheral nerves and autonomic nervous system of upper limb and shoulder Paired Sites (Cont.) ICD-O-3 Site C47.2 Peripheral nerves and autonomic nervous system of lower limb and hip C49.1 Connective, subcutaneous, and other soft tissues of upper limb and shoulder C49.2 Connective, subcutaneous, and other soft tissues of lower limb and hip C50._ Breast C56.9 Ovary C57.0 Fallopian tube C62._ Testis C63.0 Epididymis C63.1 Spermatic cord C64.9 Kidney, NOS C65.9 Renal pelvis C66.9 Ureter C69._ Eye and lacrimal gland C70.0 Cerebral meninges, NOS C71.0 Cerebrum C71.1 Frontal lobe C71.2 Temporal lobe C71.3 Parietal lobe C71.4 Occipital lobe C72.2 Olfactory nerve C72.3 Optic nerve C72.4 Acoustic nerve C72.5 Cranial nerve, NOS C74._ Adrenal gland C75.4 Carotid body 36 ( 摘自台灣癌症登記手冊總論 )

37 資料合併步驟 : 口腔與結直腸多發癌症以 Idno+Site( 四碼 )+Morphology group 去重複條件非成對器官之癌症以 Idno+Site( 前三碼 )+Morphology group 去重覆條件成對器官之癌症以 Idno+Site( 前三碼 )+lateral+ Morphology group 去重覆條件個案依上述重複條件比對後, 仍有兩筆以上之同 ID 個案, 則將有相同臨床期別者進行合併合併時, 以有進行手術者優先選, 再選期別嚴重者 37

38 First Course of Treatment The first course of treatment was given within 4 months of the first diagnosis of cancer and included all methods of treatment recorded in the treatment plan and administered to the patient before disease progression or recurrence Treatment types: Surgery (primary site, regional lymph node, other site) Radiotherapy (modality, dose, fraction etc.) Chemotherapy (local / systemic) Target therapy Hormone / Steroid therapy Immune therapy Transplant / Endocrine therapy Palliative therapy 38

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41 Difference between NHI and TCR Database Item NHI TCR database Database Reporting hospital code Personal identity number Sex Date of birth Age at diagnosis Class of case Date of diagnosis Primary tumour site Laterality Histology (ICD-O) Grade Diagnosis confirmation AJCC & Other staging Size of tumour Number of examined nodes Number of positive nodes Date of treatment Type of treatment Type & date of recurrence Smoking/BetalNut/Drinking Site-Specific Factors (SSF) 41

42 TOPIC IV: Application of Cancer Registry Database

43 Application of TCR Educate general public Annually release incidence and education information Draw up the Cancer Control schema National Cancer Control Plan, Monitor and evaluate cancer control programs Screening quality Cancer care quality ( ex: survival are various across hospitals) Develop core measurement indicators of cancer care to evaluate the performance of hospitals Data analysis, feedback and monitoring Academic researches apply to Health and Welfare Statistics Application Center (HWSAC), MOHW 100+ papers published using TCR database from 2011 to

44 The More Screening are Performed, the More Early Stage Cancer will be Found Cancer Site Proportion (%) of Cancer Cases with Early Stage Screening Detected Cases Non-Screening Diagnosed Cases Difference Cervix (Stage 0-1) Breast (Stage 0-2) Oral Cavity (Stage 0-1) Colon-Rectum (Stage 0-2) Data Source: Data included in situ and invasive cases from Taiwan Cancer Registry Database Data from Cervical Cancer Screening Database using and Oral-Colon-Rectum-Breast Cancers Screening Database using

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46 Lung Cancer Incidences by Subtypes and Gender (ONLY for cases with ages 20-84) 46

47 International Collaboration Lancet 2015; 385: year Survival for Liver cancer: - Japan 27% NO.1 - Taiwan 22% NO.2 47

48 Thank you for your attention Health Promotion Administration, MOHW College of Public Health, NTU National Taiwan University National Cancer Registry Center T H P A

, 12 2,, 6486 22372 ( IARC) / ( IACR) 41528 (CIFC), 1993 1997 89489 31307,,, 1, 1996 1997 2, 1993 1997 5 ; + 4, 19931997, ( 19961997 ) ; () 19931997 1

, 12 2,, 6486 22372 ( IARC) / ( IACR) 41528 (CIFC), 1993 1997 89489 31307,,, 1, 1996 1997 2, 1993 1997 5 ; + 4, 19931997, ( 19961997 ) ; () 19931997 1 12 1993 1997 1, 2, 1, 1 3, (1., 100021 ;2., 100044 ;3., 100021) :[ ], [ ] /, 12 1993 1997 [ ], 12 108 915 759, 230 024, 161 602 88 %, 0. 578,,,,12 14/ 10 21/ 10 11/ 10 15/ 10 ; 169. 3/ 10 359. 7/ 10 48.