Building a Cancer Registry in Dar es Salaam: Efforts towards Building a Population-Based Registry in Tanzania Amos R Mwakigonja, MD, MMed, PhD Director, Tanzania Cancer Registry Senior Lecturer & Consultant Anatomical Pathologist Muhimbili University of Health and Allied Sciences & Muhimbili National Hospital, Dar es Salaam
Muhimibili Univerisity of Health and Allied Sciences
“The establishment of a population-based cancer registry is highly desirable in the development of a national cancer control programme.” - WHO National Cancer Control Guidelines (2002)
INTRODUCTION A cancer registry is a systematic collection of data about malignant tumor diseases diseases. • Cancer registry" means a mechanism by which data relating to all cases of malignant d’se that occur in residents of a region is recorded and, necessary & appropriate info is compiled concerning those cases, in order to conduct epidemiologic surveys of cancer & to apply appropriate preventive & control measures.
Types of Registries • 2 major types of cancer registries: Hospital-based registries, with 2 two subcategories:
I.
• Single hospital registry • Collective registry
II.Population-based registries, can be: • Administrative, research, or cancer control oriented.
– Ideally, registries of a combination of above 3 functions predominate due to mission of the primary funding source 15 February 2013
Cancer Registry
4
Types of Registries • Special cancer registry: Established to collect & maintain data on a particular type of cancer. Eg. Gilda Radner Familial Ovarian Cancer Registry
15 February 2013
Cancer Registry
5
• Goals of hospitalbased registries include:
• Goals of populationbased registries:
a. Improvement of patient care b. Professional education c. Administrative information d. Clinical research
15 February 2013
Cancer Registry
a. Cancer prevention b. Early detection c. Determination of cancer rates and trends d. Patterns of care and outcomes e. Research f. Evaluation of control efforts 6
Cancer Registry: A Monitoring Tool Prevention & Early Detection Programs Treatment
Palliative Care
Epidemiological and biomedical research
Background • Currently, no established population-based cancer registry exists in Tanzania • But there are institutional registries at ORCI and KCMC which are not fully functioning
DAR ES SALAAM: HAVEN OF PEACE
Dar es Salaam, Tanzania
Failure due to: Cancer Registries History of Tanzania (1)
Lack of collaboration from pathologists
(2) Lack of supervisory registry with appropriate medical knowledge and training (3) Inadequate computer and technology Moshi support Kilimanjaro Christian Medical Center 1974 - 2006
(4) Lack of coordinated leadership due to fractured interests by medical institutions (5) Insufficient funding from local stakeholders
Dept. of Pathology, MNH 1966 - 2003
Progress in addressing past failures:
Long-Term Vision: First Steps (1) Lack of collaboration from pathologists Engaging pathologists in pilot-testing and decisionmaking
(2) Lack of supervisory registry with appropriate medical knowledge and training Hosting CanReg5 Software Training for registrars IARC, France University of MNH and ORCI California, San Francisco (3) Inadequate computer and technology support Piloting mobile-health technology for cancer registration
(4) Lack of coordinated leadership due to fractured interests by medical institutions Assembled the Tanzania Cancer Registry Steering Committee
(5) Insufficient funding from local stakeholders TBD
African Cancer Registry Network (AFCRN)
at
Long-Term Vision: First Steps Our success contingent upon: (1) Official recognition of the Tanzania Cancer Registry Steering Committee as the governing body that oversees all hospital- and population-based IARC, cancer Franceregistration efforts in University of California, San Tanzania. Francisco
(2) Inception of a budget line item that will ultimately provide salary support for the employees of the Tanzania Cancer Registry. (3) Stipulation and enforcement of mandatory reporting of all suspected and confirmed cancer cases by healthcare centers throughout the Dar es Salaam registry. African Cancer Registry Network (AFCRN)
Tanzania Cancer Registry Project (TCRP) • This is the pilot phase of a broader initiative to build a population-based cancer registry in Dar es Salaam (the commercial capital of Tanzania) and later on roll-out to other major centers in Tanzania including KCMC, Bugando etc.
Hypothesis • Use of new technology to facilitate remote data entry may aid in implementation of a cancer registry and may address commonly faced barriers to completeness and validity of data. • About 60% cancer registry data from subSaharan Africa comes from pathology labs
Initial Registry Aims • 1) To ascertain the completeness of reporting cancer diagnoses to a central registry in Dar es Salaam (phase 1). • 2) To initially start a hospital based cancer registry at three major health facilities having pathology labs in Dar (for 12 mo)-phase 1. • 3) To prepare ground for a population-based cancer registry to start with phase 2
Methods • Meetings previously held with academic leaders and pathologists in Dar es Salaam – Consensus agreement to collaborate in the establishment of a population-based Cancer Registry – An inter-institutional/international cancer registry steering committee was formed
• Focus on registration of pathologically confirmed malignancies during 3-month pilot period
Methods • Planning phase: – Development of a multi-user data collection system using CanReg5© done – Training of pathology department staff to utilize netbooks for remote data entry done
• Data collection phase (3 months): – Pathology departments will input new pathologic diagnoses of malignancies to a central database
3 pathology departments in Dar es Salaam which review cases 1) Muhimbili National Hospital (MNH) 2) Aga Khan Hospital (AKH) 3) TMJ Hospital
Long-Term Vision
PopulationBased Cancer Registry for Dar es Salaam
Long-Term Vision: First Steps
Hospital-Based Registries @ Pathology Sites • MNH • Aga Khan • TMJ Existinpital-Ba Registries • ORCI • TMJ
Methods Aga Khan Hospital Muhimbili National Hospital
TMJ Hospital
Central Registry
Long-Term Vision: First Steps Tanzania Cancer Registry Streering Committee
APHTA
Results: 1. Dr Amos Mwakigonja participated in the Kampala-Nairobi training in September 2011 2. Experienced Cancer Registrar (Mr. Seif A. Mkamba) was recruited since 1st October 2011 3. Amos and Seif participated in the IACR Meeting in Mauritius October, 2011
The Kampala-Nairobi Training 2011 Amos, Sarah and the group from Ethiopia, Sudan
Amos and the group from Ethiopia, Sudan
Results: 5. Cecile Ingabire was facilitated by AFCRN to come to Dar and gave basic training to 5 staff at ORCI 6. MOHSW sensitization done in late October when Dr. Max Parkin visited 7. A n office space has been acquired at ORCI 8. A desktop computer to act as a main server is being procured by MOHSW 9. Data collection started from 1st November, 2011
Cecile Ingabire doing CanReg5 training at ORCI
Results: 9. Data collection was done at Aga Khan Hospital at least 40 cases 10.Data collection at TMJ stalled due to poor cooperation but we are working on the issue 11.Data collection completed at MNH but has been delayed due to i.
At MNH about 804 cases recorded for the 1st 3 months and 1142 so far and further data entry is ongoing
Results: 12. A desktop computer was donated to us by the MOHSW which we will use as our server 13. A Local registrar was recruited at MNH and received basic Canreg5 training from Cecile instead of pathologists entering data
Results: 13. Discussions and letters of introduction written to future sources of non-pathology data e.g radiology, paediatric oncology, RITA, medical records of major hospitals, etc. 14. We recovered data from an old crashed hard disk from our former Muhimbili Medical Center Cancer registry we seems to have been canreg 3 data and will need to be analyzed.
Challenges • The need for cancer registry and awareness in Tanzania still low • Official government commitment is yet to be fully procured • Data has not yet been analyzed as we lack expertise with CanReg5 analysis • We now lack full time staff including the head registrar
The late Seif Mkamba (1st Right) at ORCI in May 2012 •We very sad to report the death of our main cancer registrar in Dar es Salaam the late Mr. Seif A. Mkamba who died of a motor crash in early December 2012. •We also lost his laptop which contained all the data he was collecting
Challenges • There are two hierarchy lines at MOHSW which deal with cancer registration: the newly created NCD section is now in charge of registries vs. the diagnostic services section and no cross-talking • Incomplete patient information/records • The Chair of the Steering Committee is now VC of MUHAS so he will be stepping down
Challenges • No funds/budget is currently available to run the registry as the initial project is over • The TCR has no logistical support at all currently • Difficulties in paying salaries to the registrar and to coordinate the three hospitals without any logistics
Opportunities • The NCD Section with an assistant director and desk officer in-charge of cancer registry • The epidemiology section of MOHSW in charge of NHIMS is also interested • The ADDS is interested • A very recent national census has just been completed and the report officially launched
Future Directions • Advocacy meetings with MOHSW • Presentation of pilot data to local stakeholders to confirm that cancer is an important public health issue in Tanzania • Plan for second phase to register nonpathologically confirmed cancer cases in Dar es Salaam • Make cancer a notifiable disease
Future Directions • Link to cancer registration in other urban areas (e.g., Kilimanjaro) • Collaboration as part of the East Africa Registry Network (AFCRN) • Analyze and publish pilot study data we plan to invite a CanReg5 expert and a there is a need to acquire a fulltime staff capable of assisting with data management.
Preparations for population based registry • Reach out to other sources of data within hospitals (we started): – Medical records – Radiology records/reports – Haematology – Mortuary – Clinical oncology/ORCI
Preparations for population based registry • Start a pathology-based cancer hospital registry – Histopathology – Cytology (FNAC, Exfoliative=the Pap)
• Form a network of pathology-based hospital cancer registries
Preparations for population based registry • Reach out to other sources of data outside hospitals: – Hospices – Morgues – RITA – News media: patients seeking help, death announcements, medical reports of individuals – ??Traditional healers
Preparations for population based registry • Collaborate with cancer activist (civil/professional societies) eg MEWATA • Registries enforcement through – Involve MOHSW – Making cancer a reportable/notiffiable disease – Role of disease coding (ICD-O) – Role of HIMS (MTUHA) and HLIMS – Role of hospital patient databases to be registry friendly eg the issue of Jeeva at MNH
Team Collaborators • Amos R. Mwakigonja, MD, PhD (Co-PI, MUHAS) • Katherine Van Loon, MD, MPH (Co-PI, UCSF) • Ann M. Nelson, MD (Pathologist, Joint Pathology Center, Walter Reed Army Medical Center) • Aparna Raj, MD-HSPH, Boston • Powell Perng,-Univ Michigan • Charles Massambu, DDS, MMed, MMed Sci-(ADDS) MOHSW
Team Collaborators • • • •
Twalib Ngoma, MD-ORCI Ephata Kaaya, MD, PhD (MUHAS) Robert A. Hiatt, MD, PhD (UCSF) John Bartlett , Charles Muiruri , et al, from Duke University • Global Health Research Foundation
Acknowledgments • This registry and research is supported by a grant from the National Institutes of Health, University of California, San Francisco-Gladstone Institute of Virology & Immunology Center for AIDS Research, P30-AI027763 as well as • the MOHSW, Dar es Salaam, Tanzania, ORCI, MNH, MUHAS and Aga Khan Hospital/TMJ through APHTA. • The late Seif A. Mkamba (Former Registrar, Tanzania Cancer Registry) Deceased
THE UPHILL ROAD TO UNDERSTANDING & CONTROLLING CANCER/ the resource-limited settings of sub-Saharan Africa (Mt. Kilimanjaro, TZ)
Thank you for your time
East African Registry Network Meeting in Arusha, 2011
