1. THE GUYANA CANCER REGISTRY PRESENTED BY: Penelope Layne: RN,RM,Dp.OSH, BSC Nursing Mangement REGISTRAR GUYANA CANCER REGISTRY July 2013 PRESENTED BY: Penelope Layne: RN,RM,Dp.OSH, BSC Nursing Mangement REGISTRAR GUYANA CANCER REGISTRY July 2013

2. STAFF In addition to the Registrar the registry has: 1.Two registry officers responsible for the collection and abstraction of data from all sources. 2.One data entry clerk whose responsibility it is to enter all data collected. In addition to the Registrar the registry has: 1.Two registry officers responsible for the collection and abstraction of data from all sources. 2.One data entry clerk whose responsibility it is to enter all data collected.

3. INTRODUCTION At both the national and community level, cancer registration schemes are central to research into the nature and causation of cancer and to the planning of health service resources and cancer control programs. At both the national and community level, cancer registration schemes are central to research into the nature and causation of cancer and to the planning of health service resources and cancer control programs.

4. INTRODUCTION The need to learn more about the cause of cancer, to identify those at risk, and the most effective modalities of treatment requires a vast amount of data to be collected, studied and evaluated. The Cancer Registry is the basic tool used in this process. The need to learn more about the cause of cancer, to identify those at risk, and the most effective modalities of treatment requires a vast amount of data to be collected, studied and evaluated. The Cancer Registry is the basic tool used in this process.

5. THE GUYANA CANCER REGISTRY When the Guyana Cancer Registry was established in May of 2000, cancer was the fifth leading cause of death in Guyana and of grave concern to a group of physicians. The Ministry of Health listened to the concerns of these physicians who were calling for the establishment of a “Population Based National Cancer Registry”

6. THE CANCER REGISTRY By the end of 2008, cancer was the third leading cause of death overall, the third leading cause of death in males and the fourth leading cause of death among females. The Registry provided and continues to provide such data to our country’s chronic diseases department. By the end of 2008, cancer was the third leading cause of death overall, the third leading cause of death in males and the fourth leading cause of death among females. The Registry provided and continues to provide such data to our country’s chronic diseases department.

7. OBJECTIVES OF THE CANCER REGISTRY As a population based registry we:  Collect and process relevant data from all health institutions, laboratories and medical practitioners in both the public and private sectors where available;  Facilitate the exchange of information on cancers, its treatment and follow up management (if available); As a population based registry we:  Collect and process relevant data from all health institutions, laboratories and medical practitioners in both the public and private sectors where available;  Facilitate the exchange of information on cancers, its treatment and follow up management (if available);

8.  Improve the quality and accuracy of available data on mortality and morbidity relating to the incidence/prevalence of Cancer in Guyana;  Provide health authorities with reliable data to facilitate the planning and administering of comprehensive cancer services including cancer prevention and control.  Improve the quality and accuracy of available data on mortality and morbidity relating to the incidence/prevalence of Cancer in Guyana;  Provide health authorities with reliable data to facilitate the planning and administering of comprehensive cancer services including cancer prevention and control. OBJECTIVES

9. FUNCTIONS OF THE REGISTRY  Maintenance of a data base of all positive cases of cancers occurring in Guyana in which the clinical and pathological characteristics of the cancers are collected continuously and systematically from various data sources documented.

10. FUNCTIONS  Dissemination and exchange of information derived from the Cancer Registry to health personnel and health facilities locally and internationally.  Analysis and interpretation of data and the provision of quality information to health professionals and the general public.  Dissemination and exchange of information derived from the Cancer Registry to health personnel and health facilities locally and internationally.  Analysis and interpretation of data and the provision of quality information to health professionals and the general public.

11. FUNCTIONS  Collection of accurate data thereby providing programs of interest on cancer to hospitals, patients, members of the public and health care professionals.

12. RELATIONSHIP TO THE MINISTRY OF HEALTH  part of the chronic diseases program  Shows early indicator in shift of the geographical distribution of cancer.  Tells the burden of the disease.  Assist the Ministry in planning programs relating to cancer control.  part of the chronic diseases program  Shows early indicator in shift of the geographical distribution of cancer.  Tells the burden of the disease.  Assist the Ministry in planning programs relating to cancer control.

13. REGISTRATION PROCESS (How data is collected)  Data is actively collected from the costal and all major regions of Guyana.  More than twenty five (25) health units are covered by the two Registry Officers.  All suspected cases of cancer are referred from the outlined regions to the National Referral hospital in Georgetown.  Data is actively collected from the costal and all major regions of Guyana.  More than twenty five (25) health units are covered by the two Registry Officers.  All suspected cases of cancer are referred from the outlined regions to the National Referral hospital in Georgetown.

14. How data is collected (contd.) The Registry partnered with “The Rural Area Medical” team (a nonprofit private organization). This partnership produced valuable information that was shared with the registry. Information was obtained from the far flung regions of Guyana. The Registry partnered with “The Rural Area Medical” team (a nonprofit private organization). This partnership produced valuable information that was shared with the registry. Information was obtained from the far flung regions of Guyana.

15. CONSTRAINTS TO CANCER REGISTRATION IN GUYANA The registry has passed through its teething phase. However,  We still loose those persons diagnosed in some interior areas. There is no follow up.  There is still a small percentage of persons who receive treatment out of Guyana.  We believe we are still only capturing 80% of our cancer cases. The registry has passed through its teething phase. However,  We still loose those persons diagnosed in some interior areas. There is no follow up.  There is still a small percentage of persons who receive treatment out of Guyana.  We believe we are still only capturing 80% of our cancer cases.

16. SUCCESSES  Complete access to the Guyana Cancer Institute for the past five (5) years and counting. Previously, the cancer registry was denied access to this vital set of information.  Assistance from the RAM organization in collecting much needed information on cervical cancer in some rural areas. (they have now started working in other outlined regions.)  Complete access to the Guyana Cancer Institute for the past five (5) years and counting. Previously, the cancer registry was denied access to this vital set of information.  Assistance from the RAM organization in collecting much needed information on cervical cancer in some rural areas. (they have now started working in other outlined regions.)

17. SUCCESSES  The registry collaborated in the following studies:  Breast cancer survival in women of African descent living in the US and in the Caribbean: “effect of place of birth”.  Prostate Cancer characteristics and survival in Males of African Ancestry.  The registry collaborated in the following studies:  Breast cancer survival in women of African descent living in the US and in the Caribbean: “effect of place of birth”.  Prostate Cancer characteristics and survival in Males of African Ancestry.

18. SUCCESSES (contd)  Cancers among women in the Guyanese population 2005 – 2010. A paper presented by the Registrar at the 2012 conference of the AC3 collaborative group in Philadelphia.  This paper was also accepted for presentation at the 2012 International Association For Research on Cancer at their conference held in Scotland.  Cancers among women in the Guyanese population 2005 – 2010. A paper presented by the Registrar at the 2012 conference of the AC3 collaborative group in Philadelphia.  This paper was also accepted for presentation at the 2012 International Association For Research on Cancer at their conference held in Scotland.

19. SUCCESSES (contd)  An increase in the use of our data by students of the university of Guyana. Students, not only in the Faculty of Health Sciences, are using the data for various kinds of research.  An increase in the use of our data by students of the university of Guyana. Students, not only in the Faculty of Health Sciences, are using the data for various kinds of research.

20. FUTURE PLANS  Educational interventions are planned around data collection from hospitals.  The registry hopes to collaborate with PAHO in the production of brochures with pertinent information on all cancers.  Currently in the process of a ten year report on all cancers in our data base.  Educational interventions are planned around data collection from hospitals.  The registry hopes to collaborate with PAHO in the production of brochures with pertinent information on all cancers.  Currently in the process of a ten year report on all cancers in our data base.

21. MAJOR CANCERS

23. THE END THANK YOU FOR YOUR PATIENCE QUESTIONS?????