Cancer Registration
Oncology Team
Tulip Integrated Cancer Clinic
Dr Sardjito General Hospital
TULIP integrated cancer clinic
• Funded by Dutch Cancer
Foundation (KWF)
• Operated since 2001
• Service: adult oncology
cases.
• Multi-disciplinary approach.
Number of cancer visits
Top 5 visits in 2012
Oncology management still
spreads in separated units
First visit
Diagnostic
Cancer clinic
Radiodiagnostics
Other clinics
(departs of surgery,
gynaecology,
ENT, pulmonology,
etc)
Dx Lab and supports
Pathology,
Molecular biology, immunology,
clinical chemistry, cytogenetics
Treatment
Chemotherapy
in general wards and one
day care “Tulip”
Surgery
Radiotherapy
Tulip cancer clinic and radiotherapy
have particular medical records
Background
• Cancer registration has not been comprehensively done.
• Systematic collection of data for every cancer patient have
not been registered well.
• Bottleneck includes
– commitment to persist the work
– lack dedicated person in doing documentation
– financial support
• Lack information to support policy in improving cancer
management.
• A small registration has been started in Tulip.
Tulip cancer registration
• It started in 2012.
• Research intention.
• Aim:
– cancer incidence
– success of treatment
– comparison of available treatment to the standard, treatment
modalities
• Case report form – based.
• Involves data from 2007-2011 on 4 cancer types:
– Breast cancer
- Colorectal cancer (CRC)
– Nasopharyngeal cancer (NPC)
- Multiple myeloma (MM)
• Principle: starts small and grows. Other types of cancer will be
registered as well.
(Non-official) organization
Head of subdepart of hematology
and medical oncology
Data coordinator - CRC
(subspecialty fellow)
Data coordinator - NPC
(subspecialty fellow)
Head of Tulip
cancer clinic
Data coordinator –
breast ca
Data coordinator - MM
(subspecialty fellow)
(subspecialty fellow)
Data manager - CRC
Research assistant
Data manager – NPC
Research assistant
Data manager – Breast
Research assistant
Data manager – MM
Research assistant
Items on Case Report Form
• Demography
(Patient’s Initial, Patient’s Code, Tulip/RSUP Dr. Sardjito MR, Date of Birth, Age, Address, Contact Number,
Address Type, Sex, Occupation, Education Level, Funding, Risk Factors, Past History)
• Diagnosis
(Visit Type, Chief-complaint, Early Sign, First Party Treating Chief-complaint, Chief-complaint to Medical-attention
Period, Early-detection to Surgery Period, Surgery to Chemotherapy Period, Early-detection, Additional Tests, Performance Status, Clinical
Diagnosis, Pathological Diagnosis)
• Therapy
• Post-therapy Monitor
• Second-line therapy*
(Surgery, Chemotherapy, Radiotherapy, Additional Tests, Toxicity)
(Treatment Response, Event)
(Indication, Type, Regimen, Start Date, End Date, Duration, Cycle, Additional Tests,
Toxicity)
•
•
•
•
Post-Second Line Therapy Monitor
Consecutive Therapies
Follow-up
Other Analysis
(Treatment Response)
(Latest Follow-up Date, Final Status, Overall Survival, Disease Free Survival, Progression Free Survival)
(Metastasis, Biomarkers, Comorbidity)
Flow of data collection
Medical Record
(Tulip Integrated Cancer Clinic)
Data verification and exclusion
Case Report Form
Medical Record
(RSUP Dr. Sardjito)
Data completion and verification
Excell database
SPSS
Analysis
Interim results
Number of cases of the 4 cancer types
387
88
59
57
65
42
38
9
70
57
8
17
18
20
Age distribution (breast ca)
Age distribution (CRC)
Age distribution (NPC)
Age distribution (MM)
Sex distribution
Histology grading (breast cancer)
Histology grading (CRC)
Histology grading (NPC)
Treatment modality (Breast cancer)
Treatment modality (CRC)
Treatment modality (NPC)
Treatment modality (MM)
Overall survival (CRC)
Overall survival (NPC)
Data of CRC on SRiKanDi (n= 173)
CRC on SRiKanDi (topography)
Data of CRC on SRiKanDi (morphology)
Challenges
• MR searching
– Often takes days to find and get them ready for data
entry
• Incomplete information (either in Tulip or central MR)
• Data discordance
• Loss to follow up  needs mail and call checking.
• Registration technical trainings
• Multiple data sources
• Funding and organization
Can we set up such organization?
RSKN Dharmais (1996-now)
Further steps
• Consolidation with other departments (Indonesian society of
oncologist, Yogyakarta branch)
– Surgeon (oncology surgeon)
– Radiology (diagnostic and radio-oncology)
– Pathology
– Pediatric
– Etc
• Study on data collection and administration in order to perform
hospital-based cancer registration (Guardian YS, MD, MHealthinfo)
• Trainings
• Set up organization
• Learn from other centers (Dharmais, overseas)
• Fund raising (self-funded  grant attract)
Acknowledgement
Steering committee
Teguh Aryandono, MD, PhD, Prof.
(oncology surgeon)
Kartika Widayati, MD – Head of Tulip clinic
(hematologist-medical oncologist)
Ibnu Purwanto, MD
(hematologist-medical oncologist)
Kunta Setiaji, MD – Chief of cancer committee
(oncology surgeon)
Data coordinator
Susanna H. Hutajulu, MD, PhD (Internist)
Mardiah Suci H, MD, PhD (Internist)
Femiko Mora, MD (Internist)
Suryo A Taroeno, MD (Internist)
Data manager
Wahyu Wulaningsih, MD, MRes.
Naomi Yoshuantari, MD
Zulrahman, MD
Sri Wahyuni, Public health
Project leader
Johan Kurnianda, MD (hematologist-medical
oncologist)
Multidisciplinary oncology team for cancer registry
Artanto, MD (oncology surgeon)
Wigati D, MD (radio-oncologist)
Retno Dwi D, MD, (radio-oncologist)
Henry Kusumo, MD (radiologist)
Lina Choridah , MD (radiologist)
Ediati, MD (pathologist)
Ghozali, MD (pathologist)
Eddy Supriyadi, MD, PhD (pediatrician, oncologist)
Nungki Anggorowati, MD, PhD (pathologist)
Bambang Hariwiyanto, MD, PhD (ENT oncologist)
Sagung Rai Indrasari, MD (ENT oncologist)
Camelia Herdini, MD (ENT oncologist)
Burham W., MD (gynaecology oncologist)
Lutfan Lazuardi, MD, PhD (health informatics)
Guardian Y S, MD, MHealthinfo (health informatics)
Fatwasari Tetra Dewi, MD, PhD
Etcs.
Data of CRC on SRiKanDi (ICD 10)
Overall survival (Breast cancer)
Overall survival (MM)