X
GO

Presentation titled “Supporting the improvement of data availability for cancer control and prevention in the Caribbean”, 64th CARPHA Annual Health Research Conference, Trinidad and Tobago, June 20, 2019.

During the 64th CARPHA Annual Health Research Conference, the Caribbean Hub presented on the work completed over the period 2015 – June 2019.

For a copy of the published abstract, please visit https://www.mona.uwi.edu/fms/wimj/vol-68-suppl-1-caribbean-public-health-agency-2019

The IARC Caribbean Cancer Registry Hub participated in the NAACCR/IACR 2019 Combined Conference and delivered three oral presentations:
1. Overcoming challenges related to cancer case identification in rural West Guyana
2. Implementing a sub-regional virtual cancer registry to support cancer registration in 10 Caribbean Countries
3. A first look at cancer incidence rates and trends in Bermuda over the 10-year period 2007-2016

For a copy of the published abstract, please visit https://www.naaccr.org/wp-content/uploads/2019/06/NAACCR_IACR_Abstract_Program_Final_.pdf

The Caribbean Hub participated in and presented at the first face-to-face meeting of the Eastern Caribbean Diagnostic Network (EC-DON). The objective of this network is to improve diagnosis, care and treatment of persons with cancer in the countries of the OECS. The group is working to achieve improved cancer care and treatment in the OECS through standardizing of procedures for diagnosis including use of telemedicine and modernized techniques to improve cancer diagnosis and reporting. In addition, the network will implement mechanisms to facilitate use of a multidisciplinary approach to cancer care and treatment in the OECS, as a means of improving outcomes for cancer patients in the region.

As a means of building capacity for cancer registration in the Caribbean, a 4-part virtual training webinar series was completed for 5 Caribbean cancer registries in cancer coding and staging. The series was facilitated by IARC GICR Regional Trainers Nkese Felix (Dr Elizabeth Quamina Cancer Registry, Trinidad and Tobago) and Gonçalo Forjaz de Lacerda (Azores Cancer Registry, Portugal and NCI Fellow).

A copy of the agenda for the webinar series can be downloaded here

SEER*Stat is a powerful statistical application that is available free of charge from the US National Cancer Institute and provides a mechanism for the analysis of population-based cancer registry data. It has modules for the analysis and reporting of the four most common cancer-related metrics: incidence, survival, prevalence, and mortality.

SEER*Prep is a software that converts text data files to the format required by SEER*Stat. The objective of these series of webinars is to facilitate the use of SEER*Stat software for data that are not in accordance with the NAACCR format. Specifically, we will make use of a more generic, simplified format that complies with data usually available from cancer registries across the world, thus facilitating the use of SEER*prep and SEER*Stat. New variables in this global format include CI5 groupings and Essential TNM. These features will facilitate analysis and reporting of population-based cancer data in a standard format.

In these series of webinars, participants will be guided on a step-by-step fashion in the process of how to use SEER*Prep to generate a SEER*Stat database for analysis of incidence (webinar 1) and mortality (webinar 2) data, using the new global format. The demonstration will be done using real data. Future webinars will focus on how to use SEER*Stat more in-depth (dates TBD).

By the end of each of the first 2 webinars participants should be able to:

  • Define a Directory to save user-defined data, reports and database description files
  • Understand each variable in SEER*Prep’s database description file
  • Make use of user-defined variables
  • Convert text data into fixed length format using FixLen
  • Generate a SEER*Stat database using SEER*Prep
  • Check and, if necessary, correct any variable in the original file using the report generated by SEER*Prep
  • Configure file locations in SEER*Stat
  • Generate frequencies and rates (age-specific, crude, age-standardized) in SEER*Stat
  • Generate standard reports (e.g., CI5 format)
  • Create and edit variables using the dictionary in SEER*Stat

The International Agency for Research on Cancer (IARC) facilitated a “Data Quality – Train the trainers Workshop’’ on the aforementioned dates last December as part of its Global Initiative for Cancer Registry Development (GICR).

A key component of the IARC Global Initiative for Cancer Registry Development (GICR) is the development of trainer networks to advance training within Hub regions – termed GICRNet. This ‘train the trainer’ model establishes specific networks to deliver regional courses and provide support to registries. The programme is based on the need to make use of existing resources and joint reference material to reach a large number of persons. The overall goal of the initiative is to make training more timely, accessible and locally relevant.

Participants who attended this training were from the 6 regions that the IARC Hubs represent, namely from the Caribbean Hub, the Izmir Hub (Northern Africa, Central and Western Asia), the Latin American Hub, the Mumbai Hub (South, Eastern and South-Eastern Asia), the Sub-Saharan African Hub and the Pacific Islands Hub.

Sarah Quesnel-Crooks, Programme Coordinator for the IARC Caribbean Cancer Registry Hub based at CARPHA and Jacqueline Campbell, Data Quality Coordinator for The Barbados National Registry for Chronic Non-Communicable Diseases attended the workshop from the region covered by the Caribbean Hub. They and are now considered GICRNet trainers in data quality and are available to provide training on data quality for cancer registries in our region.

For more information on GICR, please visit http://gicr.iarc.fr/.

The overall goal of the workshop was to provide basic and detailed training on recommended standard cancer registry procedures and the assessment of cancer registry data.

Specifically, the workshop:

  • Provided a background on the development of the Caribbean Registry Manual: Data Collection and Operating Procedures Module.
  • Provided a detailed review of recommendations for standard operating procedures in Caribbean cancer registries.
  • Provided in-class training on coding primary site cancers and tumor morphology using ICD-0-3, instructions for reporting on multiple primary tumors and the instructions for abstracting information on extent of disease using Essential TNM.
  • Provided in-class training on the recommended methods for assessing the quality and completeness of cancer registry data.
  • Developed a network among workshop attendees to provide support for each other for peer mentoring in their future work.

      • The agenda can be seen here

The IARC Regional Hub for Cancer Registration for the Caribbean was officially inaugurated on June 12, 2018 during the 26 th Meeting of Chief Medical Officers of Health in Basseterre, St Kitts and Nevis.

Chief Medical Officers of Health from Anguilla, Antigua & Barbuda, Bahamas, Barbados, Belize, Bermuda, British Virgin Islands, Cayman Islands, Dominica, Guyana, Haiti, Jamaica, Montserrat, St. Kitts & Nevis, St. Lucia, St. Vincent & the Grenadines, Suriname, Trinidad & Tobago and the Turks and Caicos Islands were in attendance.  Also present were senior members of staff and representatives from the Caribbean Community (CARICOM) Secretariat, the University of the West Indies (UWI), the Pan American Health Organization (PAHO/WHO) and the Caribbean Public Health Agency (CARPHA). 

Dr Glennis Andall-Brereton, Principal Investigator (PI) of the IARC Caribbean Cancer Registry Hub, chaired the official inauguration ceremony.

The ceremony was opened by Dr James Hospedales, Executive Director of CARPHA who presented the work completed by the IARC Caribbean Cancer Registry Hub from its inception in 2015 to present and activities planned for the period 2018-2019. Dr Damali Martin, Global Health Coordinator for the Epidemiology and Genomics Research Program, Division of Cancer Control and Population Sciences of the National Cancer Institute (NCI) provided remarks on behalf of the NCI and noted the financial and technical support provided to the Caribbean Hub by the NCI, the Centers for Disease Control and Prevention (CDC) and the North American Association of Central Cancer Registries (NAACCR). Dr Kenneth George, Chief Medical Officer of Barbados and Dr Cheryl Peek-Ball, Chief Medical Officer of Bermuda, provided supporting remarks for the work of the Caribbean Hub and highlighted the importance of cancer registry data for guiding the development of policy in their respective countries. Dr Freddie Bray, Section Head for the Section of Cancer Surveillance at the International Agency for Research on Cancer (IARC) then provided information on the Global Initiative for Cancer Registry Development (GICR), which was initiated by IARC to strengthen cancer registration in low and middle- income countries and on the network of Regional Hubs that the Caribbean Hub now joins. 

At the end of the ceremony, the IARC Caribbean Cancer Registry Hub plaque was unveiled by Dr James Hospedales of CARPHA and Dr Freddie Bray of IARC. The plaque will be affixed to the main building at the CARPHA Headquarters in Port of Spain, Trinidad and Tobago.

A copy of the agenda is included below:

 

Photos from the Launch

 

Dr Glennis Andall-Brereton

 

 

Dr Damali Martin

 

 

Dr Kenneth George

 

 

Dr Freddie Bray

 

 

 

Interviews from the Launch

 
Dr. C. James Hospedales, Executive Director, CARPHA
 
Dr Glennis Andall-Brereton, Principal Investigator, IARC Caribbean Cancer Registry Hub, CARPHA
 
Mr. Leslie Mery, Section of Cancer Surveillance, IARC
 
Dr Damali Martin, Division of Cancer Control and Population Sciences, NCI
 

This workshop was a collaborative effort between IARC, CARPHA, the African-Caribbean Cancer Consortium (AC3) and the Fox Cancer Chase Center (FCCC).

The workshop objectives were: • To define the benefits of translating NCD/Cancer research results to policy and to highlight successful models in the Caribbean • To highlight models for translational research in the Caribbean and the role of different partners • To define research priorities for translational research in the Caribbean The 1-day workshop took place in Basseterre, St. Kitts and Nevis on June 13th, 2018. 

During the 63 rd Annual CARPHA Health Research Conference, held at the Marriott Hotel in Basseterre, St. Kitts & Nevis, a feature lecture titled “Global cancer trends to global cancer action” was presented by Dr Freddie Bray of the International Agency for Research on Cancer (IARC). Dr Bray reviewed current and projected global cancer data and focused on action needed to address the global problem, including strengthening cancer surveillance in the Caribbean through the support of the newly launched IARC Caribbean Cancer Registry Hub. A key message was the variation in cancer incidence by human-development. The poorest countries of the world have cancer profiles with a greater proportion that are infection related as compared to more developed nations. Further, the largest relative expected increases in cases over the next 30 years is projected to occur in low- and middle-income countries, underscoring the need for cancer control planning guided by population-based cancer registries.  

Presentations were also made during a special Conference session dedicated to the launch of the Hub. The session was moderated by the Programme Coordinator for the Caribbean Hub, Mrs. Sarah Quesnel-Crooks and included four presentations. An excerpt from the 63 rd Annual CARPHA Health Research Conference Programme is included below:

In his presentation on the Global Initiative for Cancer Registry Development (GICR), Mr Les Mery of IARC highlighted the rationale for the GICR, the approach and progress to date. The overall objective of the GICR is to inform cancer control by strengthening capacity worldwide in cancer surveillance. IARC Regional Hubs covering Africa, Asia, the Caribbean, Latin America and the Pacific Islands are providing training, consultancy support, developing research and establishing networks.  GICR Net, a network of regional trainers has expanded the availability and access to support in target countries. To assist the IARC Regional Hubs, Collaborating Centres have been incorporated together with greater focus through the selection of GICR Partner Countries.  

Dr Glennis Andall-Brereton of CARPHA presented on the work of the Caribbean Hub and its support to cancer registration in the Caribbean. She noted that cancer is the second-leading cause of all deaths in the region and that Caribbean countries are among the worst affected in the Americas. She indicated that the Caribbean Hub became operational in 2015, is based at CARPHA, is a collaborative effort with several key international partners and provides support to all independent countries and territories located within the Caribbean Basin. Key achievements of the Caribbean Hub from its inception in 2015 to present were presented. These included four in-country site assessments, several regional training workshops and training opportunities provided to cancer registries in the region, two data quality assessments, published research, technical support provided to registries in CanReg5, the development of a Caribbean Standard Operating Procedures manual, the development of promotional and advocacy material and the official inauguration of the Caribbean Hub on June 12, 2018. Planned activities for the period 2018-2019 were also reviewed. These included regional training workshops in standardized registry procedures and in coding and staging, two in-country site assessments and data quality assessments for two cancer registries, technical support for the establishment of an OECS cancer registry and for strengthening cancer registration in Haiti, technical software support for the use of CanReg5 and SEER*Stat by Caribbean cancer registries, continued advocacy for improved cancer surveillance to Caribbean leaders and policy-makers and for the work of the Caribbean Hub to Caribbean and International stakeholders, continued research projects, work to strengthen partnerships and resource mobilization activities.

Dr Damali Martin of the NCI presented on the role of NCI for cancer control in the Caribbean including NCI’s activities for increasing capacity of cancer research and registration.  NCI performed a number of site visits throughout the Caribbean region to learn priorities for cancer control and prevention from a number of stakeholders.  Information from those site visits were used to plan activities around cancer research and registration.  In 2014, the NCI in partnership with other NIH institutes, St. George’s University, CARPHA, and PAHO hosted a grant writing workshop with the objective of encourage Caribbean scientists to use the grants process for research support.  The NCI also partnered with CARPHA to implement a small cancer research program, which funded 6 peer-reviewed research grants at US $50,000 each (over a two-year period).  NCI also led a multi-agency meeting on non-communicable disease surveillance, with a focus on cancer registration. This meeting led to the implementation of the IARC Caribbean Registry Hub, under the GICR.  In addition, the NCI has hosted two meetings (one face-face and one virtual meeting) for cancer control leadership planning with the goal to engage a multi-sectoral team of country leaders in the development and implementation of evidence-based cancer control plans. These discussions are currently ongoing through the use of the ECHO platform which aims to establish knowledge-sharing amongst cancer control and research professionals to support improvements in strategic cancer control in the region. The NCI will continue to work with their national and international partners on cancer control and prevention initiatives in the region.

The final presentation was made by Shelly-Ann Forde, Registrar of the Barbados National Registry for Chronic Non-Communicable Disease (BNR) on the registration model used in Barbados and the support that has been provided to their registry by the Caribbean Hub to strengthen cancer registration. She noted that the BNR is a tri-fold population-based registry that collects data about new cases of cancer, stroke, and acute myocardial infarction. Cost savings was presented as the major benefit of the tri-fold registry as limited resources could be shared across the functions of the 3 registries. The BNR Registrar also noted that through the support of the IARC Caribbean Cancer Registry Hub, cancer registration procedures had been reviewed and revised to be more aligned with regional standards and training opportunities had been provided to several staff members of the registry.

Participants at the session included mostly researchers, medical students and staff from Caribbean cancer registries. The session generated active and useful follow-up discussions

Session Attendees
 
Session Attendees
 
Mr. Les Mery
 

The overall goal of the workshop was to train participants in the use of SEER*Stat to perform useful analyses using national mortality data.

Specifically, workshop attendees:

  • Manipulated the format of national mortality datasets and associated populations to enable import of data into SEER*Stat, using the software SEER*Prep
  • Learned the fundamentals of exploring data using SEER*Stat and performed useful analyses including frequencies, crude and adjusted rates, rate ratios, and trend analyses, and statistical significance
  • Interpreted the results obtained

The targeted persons for the workshop were Caribbean Hub staff, CARPHA staff and persons from select countries who have substantial experience in and are currently working with cancer registration data and/or national mortality data and persons with moderate to advanced understanding of database management and familiarity with data analysis techniques and reporting. Persons trained included the Programme Coordinator and IT specialist of the IARC Caribbean Cancer Registry Hub, four additional CARPHA staff members, cancer registry staff from national cancer registries in Barbados, Bermuda and Trinidad and Tobago as well as Ministry of Health staff from Barbados, Bermuda and Trinidad and Tobago. 

The training course was facilitated by Gonçalo Forjaz, NCI Fellow Researcher.

The full agenda can be downloaded here

Following the welcome and introductions, an overview of available global mortality data and its uses was presented. This was followed by in-depth discussions on the pros and cons of using mortality data to assess progress made with addressing the burden of different types of cancer. It was stressed that while access to accurate, timely mortality data is necessary and useful, access to reliable incidence data, obtained through population-based cancer registries, is also vital to plan and assess cancer control strategies.

SEER*Stat is a statistical software application developed by the Surveillance Research Program at the U.S. National Cancer Institute that is available free of charge and provides a mechanism for the analysis of population-based disease and mortality databases. It has been mostly used to produce cancer-related statistics such as incidence, survival and mortality rates. Data content and structure required by SEER*Stat can be obtained using SEER*Prep, an intermediary step which converts text data into SEER*Stat’s binary format and creates a SEER*Stat data dictionary. The text files used as input to SEER*Prep must be fixed length. FixLen is a program used to create a fixed length version of text files.

The hands-on training in FixLen, SEER*Prep and SEER*Stat consisted of presentations followed by live demonstrations and then the completion of example exercises by participants.  Exercises were completed using national mortality and population datasets that participants had brought with them to the workshop.

Overall there was very good feedback received from the participants. Tools to appropriately analyze national mortality data have been lacking in the region and SEER*Stat provides a user-friendly mechanism to complete such analyses.

 

The half day meeting, facilitated by the IARC Caribbean Cancer Registry Hub, took place on Wednesday 21st June 2017 during the NAACCR 2017 Annual Conference. Meeting participants included key stakeholders from Caribbean cancer registries, including 6 representatives from 4 Caribbean registries (Barbados, Haiti, Jamaica and Puerto Rico), as well as cancer registry experts from cancer registries across North America. The main objectives of the meeting were to review the draft Caribbean Cancer Registry Standard Operating Procedures Manual and to provide participants with an opportunity to contribute to the development of the final Caribbean Manual, to discuss important aspects of cancer registration, including data sharing and available training opportunities, to provide technical support in the implementation and use of CanReg 5 and to provide an opportunity for building networks to assist with the exchange of information among peers. A complete copy of the agenda can be downloaded here.

Overall, the meeting was a success in that all of the meeting objectives were clearly met and there was active and useful discussion held throughout the meeting. Positive feedback was received from those who participated and important connections were made between Caribbean registry colleagues and North American registry colleagues.

As a means of building capacity for cancer registration in the Caribbean, Hub partners and persons from select Caribbean countries attended training on the software developed by IARC for cancer registration – CanReg5. Bahamas, Belize, Guyana, Jamaica and Trinidad & Tobago were invited to the training because the Hub is currently working with these countries to strengthen cancer registration and there was an identified need for support in CanReg. The cancer registries in the Caribbean widely use either CanReg4 or CanReg5. The NCI provided funds to host the training workshop. 

The main faculty for the course, Beatriz Carballo and Gonçalo Forjaz de Lacerda, were part of the first GICR Net course on CanReg, equipping participants to serve as regional experts.

CanReg5 is an open source tool used to input, store, perform checks and analyse cancer data. It contains modules for data entry, quality control, consistency checking and basic analysis of the data. All aspects of the software application were reviewed in detail by the facilitators and the workshop participants completed the exercises on each area individually.

The complete agenda for the workshop can be downloaded here

The purpose of the workshop was to provide participants with an opportunity to contribute ideas to the development of the IARC Caribbean Cancer Registry Hub.

The objectives were:

  1. To provide an understanding of the cancer burden in the Caribbean region and around the world
  2. To provide information about the Global Initiative for Cancer Registration (GICR) in developing countries and the GICR’s IARC Caribbean Regional Cancer Registry Hub
  3. To provide information about the status of cancer registration in the Caribbean countries and to discuss models for collection of cancer data from countries, including collaborative or sub-regional approaches
  4. To teach the fundamentals of a cancer registry and how data can be used for cancer control planning

Sixteen participants representing 13 countries (Anguilla, Aruba, Bahamas, Barbados, Bermuda, British Virgin Islands, Cayman Islands, Grenada, Jamaica, Martinique, Puerto Rico, St. Lucia and Turks and Caicos Islands) participated in the workshop.