Cancer Registry

Cancer Registry
Development of hospital-based cancer registry
Lay ground for population-based cancer registry
Susanna Hilda Hutajulu, MD, PhD
Team of HBCR-PBCR development
What is a cancer registry?
• Organization charged to collect a record of data for every
patient with a diagnosis of cancer during a given time, period,
and place.
• Cancer registry provides the infrastructure and tools that are
key for
– planning new initiatives (cancer control spectrum)
– facilitating cancer research
Cancer patterns: GLOBOCAN 2012
World
Indonesia
Incidence rates were estimated for four regions
http://globocan.iarc.fr
Incidence:
1. Java, Sulawesi and Nusa Tenggara: Singapore (Malay) and Penang (Malay). All sites but
skin’ rates (2003-2007) were partitioned using sex–, site– and age–specific proportions
obtained from the Jakarta cancer registry (2005-2007)
2. Sumatra: Singapore (Malay) and Penang (Malay) (2003-2007)
3. Kalimantan: Malaysia, Sarawak rates (1998-2002)
4. Maluku and Papua: Australia, Northern Territory (2003-2007) rates
Mortality
Estimated national cancer incidence for 2012 and modelled survival.
Indonesia Health Profile 2010. Ministry of Health Republic of Indonesia, Jakarta 2006. http://www.depkes.go.id
National cancer registry targets
13.9% of Indonesian population
These cities and districts as a whole
may represent nation-wide canreg
No
1
2
3
4
5
6
7
8
9
Province
North Sumatera
South Sumatera
Banten
10
11
12
13
14
14
15
16
17
18
19
20
21
West Java
Dist
City
Dist
Central Java
DI Yogyakarta
City
City
City
Dist
Dist
East Java
Bali
South Kalimantan
North Sulawesi
South Sulawesi
City
City
City
City
City
DKI Jakarta
Dist
City
City
Dist
City
City
City
City
City
City
City/District
Deli Serdang
Palembang
South Tangerang
Tangerang
Central Jakarta
West Jakarta
South Jakarta
East Jakarta
North Jakart
Thousand Islands
Bandung
Imahi
Karawang
Semarang
Solo
Yogyakarta
Sleman
Bantul
Surabaya
Denpasar
Banjarmasin
Manado
Makassar
Area Category Population Landmass (km2)
Rural
1.790.431
2.394,62
Urban
1.455.284
400,61
Urban
1.290.322
147,19
Rural
2.834.376
1.011,86
Urban
902.973
47,90
Urban
2.281.945
126,15
Urban
2.062.232
145,73
Urban
2.693.896
187,73
Urban
1.645.659
154,01
Rural
21.082
Rural
3.178.543
1.305,77
Rural
541.177
40,20
Rural
2.127.791
1.753,27
Urban
1.555.984
373,67
Urban
499.337
46,01
Urban
388.627
32,50
Rural
1.093.110
574,82
Rural
911.503
508,85
Urban
2.765.487
374,36
Urban
788.589
127,98
Urban
625.481
72,00
Rural
410.481
157,26
Urban
1.338.663
175,77
Special Province of Yogyakarta
Size of target population for the province: 3.457.491
Sleman District:
the proposed first target of local PBCR
What we have done
Development of Sardjito hospital-based
cancer registry
1999
Pathology
department
(pathology based)
2009
ENT department
(organ specific)
Pediatric
department
(organ specific)
Advantages:
- Research-based
- Internal users
- Clinical issues and
translational research
2012
Medical oncology
division
(organ specific)
Gynaecology
department
(organ specific)
2015
2016
Official
initiation
of Sardjito
HBCR
Preparation
of Sleman-PBCR
Challenges:
- Mostly self-funded
- Not represents hospital
cancer frequency
Top 10 cancer frequency in Dr Sardjito
Hospital in 2014 (male)
120
100
80
60
40
20
0
MALIGNANT
Ghozali et al, Registratsi tumor berbasis data laboratorium patologi, 2014
Top 10 cancer frequency in Dr Sardjito
Hospital in 2014 (female)
300
250
200
150
100
50
0
MALIGNANT
Ghozali et al, Registratsi tumor berbasis data laboratorium patologi, 2014
What we currently do
Establishment of hospital-based
canreg
• Accessibility: office, equipments
• Organization
• Funding
• Staffing
• Networking
• Technical trainings
• Legal aspect
• Confidentiality measurement
Sardjito HBCR organization
Data standard
Technical trainings
Access to critical data
Flow of data collection
What we are going to do
Proposed source of data of Sleman-PBCR
Laboratory
Clinic
Hospital
25
Regional Cancer Data Center
(Sardjito hospital)
Primary Health Care
25
Insurance
Company
Vital Statistics
Time line
Hospitalbased canreg
2015-2017
Regional
populationbased canreg
(Sleman)
2016-2017
National
populationbased canreg
Coverage of
13.9 %
Indonesian
population
Thank you
dr. Luthfan Lazuardi, PhD
dr. Nungki Anggorowati, SpPA
Syamsul Arifin, SHut
dr Guardian Y Sanjaya, MHealthInfo
Sri Wahyuni, SKM
Yuliana, SKM
dr.Ariane
dr. Herindita
dr. Bestari