puerto rico central cancer registry - centro … 2013-v3.pdf · registries (npcr) of the centers...

Puerto Rico Central Cancer Registry

Guillermo Tortolero-Luna, MD, PhD

Director Cancer Control and Population Sciences Program

UPRCCC

April 13, 2013

• Diego E Zavala, MSc, PhD

– Interim Co-Director

• Karen J. Ortiz-Ortiz, MA, MPH

• Naydi Pérez, MPH

• Yadira Román Ruiz, BS, CTR

• Carlos R. Torres-Cintrón, MPH

• Maricarmen Traverso Ortiz, MPH, CGG

ACKNOWLEDGEMENT

Dr. Nayda R. Figueroa Vallés

Dr. Nayda R. Figuero-Vallés 1949-2012

“Médico de profesión, salubrista de corazón trabajó incansablemente hasta el final de sus días por el bienestar de su país”

UPRCCC Cancer Control & Population Sciences Program

BIOREPOSITORY

CORE

BIOSTATISTICS AND BIOINFORMATICS

CORE CCPSP

RESEARCH

PROGRAMS

EPIDEMIOLOGY

BEHAVIORAL SCIENCES

HEALTH SERVICE/

OUTCOMES

CANCER PREVENTION AND CONTROL PROGRAM COORDINATING CENTER

PR-CCCP PR-NBCCEDP

OUTREACH/EDUCATION

SCRENNING SERVICES

PR-CCR

SURVEILLANCE


• Cancer surveillance system for Puerto Rico

• Population-based cancer registry

• Partially funded by the National Program of Cancer Registries (NPCR) of the Centers for Disease Control and Prevention (CDC)

• Matching funds by UPRCCC and State

State Cancer Registries

• Monitor cancer trends

• Determine cancer patterns among populations

• Guide planning and evaluation of cancer control programs

• Help set priorities for allocating health resources

• Advance clinical, epidemiologic, and health services research

• Provide information for a national database of cancer incidence

PUERTO RICO CENTRAL CANCER REGISTRY

BACKGROUND

• Established in 1951

• One of the oldest registries in Latin America

• 1973-1989: SEER

• 1989-1997: limited resources

• 1997: CDC-National Program of Cancer Registries (NPCR)

BACKGROUND

• 2008: PRCCR transferred to UPRCCC (MOU PRDOH & UPRCCC)

• 2010: new Cancer Registry Law (Law 113):

Provides authority to PRCCR

Clarifies fines

Complete Transformation to Electronic submission

• 98% of medical institutions report electronically


Artículo 6.- Penalidades • Sección 1.- Toda entidad, persona, médico o institución que incumpla con las disposiciones de esta Ley o sus

reglamentos será sancionado por el Registro con una multa administrativa en una primera infracción, de tres mil dólares ($3,000) por caso no reportado, y en subsiguientes infracciones será sancionado con una multa administrativa de cinco mil dólares ($5,000) por caso no reportado.

• Sección 2.- El Registro solicitará la suspensión de cualquier licencia emitida por el Departamento de Salud, por un término no menor de seis (6) meses para los médicos, profesionales de salud e instituciones de salud que hayan incumplido con la Sección 1 de este Artículo.

• Sección 3.- Toda entidad, persona, médico o institución que no haya cumplido con el reportaje completo, fiel y oportuno por cualquier razón por dos trimestres consecutivos y no haya demostrado progreso en el cumplimiento, permitirá el acceso inmediato a los expedientes médicos y otros documentos, y el Registro recopilará los datos y exigirá el reembolso de los gastos incurridos en obtener dichos casos hasta un máximo de $100 por caso recopilado, además de las multas correspondientes.

• Sección 4.- Toda entidad, persona, médico o institución que prestando servicios bajo la Ley Num. 72 de 7 de septiembre de 1993, que establece la Administración de Seguros de Salud de Puerto Rico, incumpla con las disposiciones de esta Ley, le serán retenidos los pagos por sus servicios prestados y se detendrá cualquier negociación de contrato futuro con la Administración hasta que cumpla con la notificación de datos al Registro y pague cualesquiera de las multas y gastos administrativos que le imponga el Registro. El Registro podrá gestionar con la Administración de Seguros de Salud de Puerto Rico el cobro de las deudas por conceptos de las multas y gastos administrativos que aquí se establecen de los ingresos que las entidades, personas, médicos o instituciones devengarían por sus servicios prestados.


Host Institution

Individuals

Key Organizations

Reporting facilities

Reporting Physicians

Registrars organization

Pathologists

American College of Surgeons

State Health

Department

Puerto Rico Central Cancer Registry Advisory Committee

Cases Reported to the PRCCR?

• Reportable Cases:

• Any cancer, carcinoma, lymphoma (including Hodgkin Disease), sarcoma, leukemia, benign and malignant tumors of the CNS or any other malignant growth or neoplastic diseaseS

• Non-Reportable Cases:

• Basal cell or squamous cell skin carcinomas and carcinoma in-situ of the cervix

Who Reports to the PRCCR?

• Medical facilities

• Physicians' offices

• Radiotherapy facilities

• Chemotherapy Facilities

• Freestanding Surgical Centers

• Pathology Laboratories

Step 1

Step 7

Step 6

Step 5

Step 4

Step 3

Step 2


Pathology Laboratories

• Report within 30 days of producing path report

– Regular reports

– Tumor markers

– Reviews

– Cytology

• Entered into the PathPlus System

– Pre-coded with primary site, histology, behavior, grade, and laterality

– All reports for one person filed together

Reporting Facilities/Providers

• Facilities and physicians must report within 180 days from date of first contact

• Information – Administrative

– Demographic

– Diagnosis

– Cancer identification

– Staging

– Treatment

– Follow-up

Death Clearance

• Linkage of incidence files with death files – Usually about 10 months after end of index year

– Update

• Follow-back – Get information about the tumor reported as

underlying cause of death if patient is not in the incidence file

• Add Death Certificates Only (DCOs) to the incidence database

Consolidation

• Patient 12345678, Lastname, Firstname – Tumor 00-C504, Dxdate 01202014

• Abstract 987654321 Hosp 0000041230

• Abstract 987687652 Hosp 0000048765

• Patient 12345678 – Tumor 01-C504, Dxdate 01202014

• Abstract 987654321 Hosp 0000041230

• Abstract 987687652 Hosp 0000048765

– Tumor 02-C187, Dxdate 06142011 • Abstract 987890763 Hosp 0000048765

Standard Statistics

• Counts – Planning of services

• Incidence and Mortality Rates (Crude, age-adjusted, age-specific) – Comparisons by year, location

• Trends – Measure Changes over time

• Lifetime risk – Risk of developing cancer or dying of cancer

• Prevalence – Number of living people with the disease at a particular

time • Survival

– Number surviving a given period


10,277

13,329*

0

2,000

4,000

6,000

8,000

10,000

12,000

14,000

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

Nu

mb

er

of

Cas

es

Year

Annual Number of Cases (incidence)

PRCCR OTHER ACTIVITIES

• Dissemination of Information

– Cancer in Puerto Rico Reports

– Special Reports

– Bulletins /Fact Sheets

– Website (www.salud.gov.pr)

• Cancer Cluster Investigations

• Rapid Case Ascertainment

• Other Ascertainment/Recruitment Strategies

• Research

• Collaborations

• Processing and Evaluation Data Requests

http://www.salud.gov.pr/

INVESTIGATION OF CANCER CLUSTERS

What is a Cancer Cluster?

• Occurrence of a greater than expected number of cancer

cases within a group of people, a geographic area or a

period of time.

• Cancer Clusters may be suspected when people report

that several family members, friends, neighbors or co-

workers have been diagnosed with cancer.

• Clusters are investigated by epidemiologists, who try to

determine whether a suspected cluster represents a true

excess of cancer cases.

Cancer Cluster

• A suspected cancer cluster is more likely to be a true cluster, rather than a coincidence, if it involves one or more of the following factors:

1. One type of cancer

2. A rare type of cancer

3. A type of cancer in a group not usually affected by that cancer, such as children.

Cancer Cluster Investigations

• Villalba

• Ciales

• Coamo

• Cayey

• Vieques

Rapid Case Ascertainment System

• Data available

– Patient information

– Laboratory information

• Specimen identification

– Hospital submitted sample

– Physician submitted sample

Research

• PRCCR Initiated

• Collaborations

• Support – Provide Data

– Rapid Ascertainment

– Other Ascertainment methods

– Recruitment

Collaborations

• Local

• PRDOH

• University of Puerto Rico

–School of Public health

–School of Medicine

–Health Services Institute

–School of Allied Health Sciences

–UP/.MD Anderson Partnership Excellence in Cancer Research

–UPR Río Piedras Campus

–UPR Humacao Campus

Collaborations

• Local

• Ponce Medical School

• Medical School, Universidad Central del Caribe

• Puerto Rico Comprehensive Cancer Control Program

• Puerto Rico Cancer Control Coalition

• Puerto Rico Breast and Cervical Cancer Early Detection Program

• Puerto Rico Healthy People 2020

• Alliance for the Prevention of Chronic Conditions

Collaboraciones

• National/International – University of New York College of Dentristy (Dr. Douglas

Morse)

• A Deficit in the Detection of Very Early Oral Cancers in Puerto Rico

– University of Iowa, Ohio (Marytere Meléndez)

• Socioeconomic disparities in the incidence and mortality of hepatocellular carcinoma in Puerto Rico

– Portland State University, School of Community Health (Ellen Smith, Farah A. Ramírez-Marrero)

• Incidence of AIDS defining and non-AIDS defining cancers among Hispanics with AIDS in Puerto Rico

– University of Oxford • Collaborative Group of Observational Studies of Breast Cancer

Survivors (COBS)

Collaborations

– CONCORD-II Study

• Global Surveillance of Cancer Survival

• Over 160 Cancer Registries & 50 Countries

• UICC Sponsored

• London School of Hygiene and Tropical Medicine

Breast Lung

Colon Liver

Rectum Stomach

Prostate Cervix

Ovary Leukemia

Collaborations

Cancer Incidence in Five Continents

DATA/INFORMATION REQUEST PROCESS [email protected]

mailto:[email protected]

Request Includes Personal

Identifiers?

No Yes

Request Approved

Request Requires Evaluation

Grouped Data

No

Yes

Request Matching

of Databases

Request to Contact

Physician

Require to complete

document Level II

Require to complete

document Level III

Require to complete

document Level IV

Yes Yes

No

REQUEST APPROVED

Information Requests in 2011-2012

7%

2%

39% 31%

5%

16%

Educational Activity

Insurance Companies

School/Universities

Research

Community/Non Profit

Agencies Report

Data Requested in 2011-2012

37%

15% 6%

13%

5%

4%

4%

16% All cancers

Female Cancer

Male Cancer

Colon Cancer

Melanoma

Leukemia & Lymphoma

Pancreas

Others

Increasing the Use of the PRCCR Data and Resources

• Participation in healthcare professional’s forums

• Publication of periodic cancer reports

• Stat Facts Sheets (Increase number and revise)

• PRCCR Annual publications in local journal

• Promote the use of the PRCCR database by stakeholders

• Promote the use of the PRCCR for epidemiologic and clinical research

– Rapid Ascertainment Unit (Service)

– UPRCCC-BioRepository

CANCER BURDEN IN PUERTO RICO

Registro Central de Cáncer de Puerto Rico

Editor: Nayda Figueroa-Vallés (QEPD) MD, MPH, CTR: Director, Puerto Rico Central Cancer Registry Analysis: Analysis and Research Unit of the Puerto Rico Central Cancer Registry Karen J. Ortiz-Ortiz, MA, MPH, CTR Naydi Pérez-Ríos, MS Erick Villanueva-Rosa, MSC Maricarmen Traverso-Ortiz, MPH Collaborators: Carlos R. Torres-Cintrón, MPH Tonatiuh Suárez-Ramos Correspondence to: Luz I. Acevedo ([email protected])

Director Nayda R. Figueroa-Vallés, MD, MPH Supervisor Karen J. Ortiz Ortiz, MA, MPH, CTR Office Systems Administrator Luz Idalia Acevedo Administrator Mary Carmen Ortiz, MA Pathology & Follow Up Coordinator Verónica Rivera López, CTR Case Processing Unit Coordinator Yadira Román Ruiz, CTR Coordinator of Education and Trainings Edna Pagan Acevedo, BS, CTR Quality Control Coordinator Maria F. Merced Vélez, CTR Tumor Registrars Ana Alicea Sánchez Gladys Ojeda Reyes, BS, CTR Ileana Veguilla Rosario, BS, CTR

Iván Serrano Santiago, BS Julio A. Arce Cortés, BS, CTR Maribel Ramos Cordero Maricarmen Traverso Ortiz, BS, MPH Nivia E. Vázquez Cubano, BS, CTR Analysis and Research Coordinator/ Biostatistician Karen J. Ortiz Ortiz, MA, MPH, CTR Epidemiologist/ Biostatistician Naydi Pérez Ríos, MS Biostatistician Carlos R. Torres Cintrón, MPH Demographer Erick Villanueva Rosa, BA, MSC Database Administrator Cristino Ruiz Rivera, AS Programmer Analyst José M. Rivera Rosario, BA Programmer Consultant Omar Centeno Rodríguez, LIC

Burden of Cancer Puerto Rico, 2004-2009

• Cancer 2nd leading cause of death in Puerto Rico

• Accounts for approximately 25% of all deaths

• In 2009, an estimated 12,906 new cancer cases were diagnosed

• In 2008, an estimated 5,007 died from cancer

Figueroa-Vallés NR, Ortiz-Ortiz KJ, Pérez-Ríos N, Villanueva-Rosa E, Traverso-Ortiz, M (eds). Cancer in Puerto Rico, 2004-2009. Puerto Rico Central Cancer Registry. San Juan, PR 2012

Top Ten Incidence Cancer Sites In Puerto Rico, 2005-2009

Prostate 41.0

Colon and Rectum 13.2

Lung and Bronchus 6.4

Urinary Bladder 4.1

Oral Cavity and Pharynx 4.0

Non-Hodgkin Lymphoma 3.4

Stomach 2.9

Liver and Intrahepatic Bile 2.8

Kidney and Renal Pelvis 2.1

Leukemia 2.0

Other Locations 18.1

Breast 30.3

Colon and Rectum 13.9

Thyroid 8.0

Corpus and Uterus 7.1

Lung and Bronchus 4.3

Cervix Uteri 3.8

Non-Hodgkin Lymphoma 3.8

Stomach 2.6

Ovary 2.6

Leukemia 2.0

Other Locations 21.6

Males (N=33,190) Females (N=28,284) % %


Top Ten Mortality Cancer Sites in Puerto Rico, 2004-2008

Males (N= 13,815) Females (N= 10,669) % %

Prostate 18.6%

Lung and Bronchus 13.3%

Colon and Rectum 12.7%

Liver and Intrahepatic Bile Duct 6.0%

Stomach 5.4%

Oral Cavity and Pharynx 4.0%

Pancreas 3.7%

Esophagus 3.6%

Leukemia 3.6%

Non-Hodgkin Lymphoma 3.4%

Other Locations 27.4%

Breast 18.8%

Colon and Rectum 13.4%

Lung and Bronchus 10.1%

Pancreas 5.1%

Liver and Intrahepatic Bile Duct 4.9%

Stomach 4.4%

Corpus and Uterus, NOS 4.4%

Ovary 4.4%

Non-Hodgkin Lymphoma 3.5%

Leukemia 3.5%

Other Locations 27.5%


0

50

100

150

200

250

300

350

400

Rat

e x

10

0,0

00

pe

rso

ns

Year

Age-Adjusted Incidence Rates of Cancer by Year of Diagnosis, Puerto Rico 1987-2009

Overall

Male

Female

*Statistics that include the year 2009 are preliminary.

Cases with age unknown were included/ Statistics were generated from malignant cases only

Rates are per 100,000 and age-adjusted to the 2000 PR population

Data Source: Puerto Rico Central Cancer Registry, Preliminary Puerto Rico Cancer Incidence File (December, 2011)

(0.3%, p NS)

(0.9%; p <0.05)

0

500

1000

1500

2000

2500

00 05-09 15-19 25-29 35-39 45-49 55-59 65-69 75-79 85+

Rat

e x

10

0,0

00

pe

rso

ns

Age Groups

Age-Specific Rates of Cancer Incidence by Age Groups, Puerto Rico 2005-2009*

Overall

Male

Female





Incidence for All Types of Cancer by Age group and Sex, Puerto Rico 2005-2009*





1.1%

3.0%

10.8%

30.7%

38.9%

15.6%

1.1%

1.9%

6.5%

30.5%

44.2%

15.8%

1.1%

4.2%

15.8%

30.9%

32.8%

15.3%

0.0% 5.0% 10.0% 15.0% 20.0% 25.0% 30.0% 35.0% 40.0% 45.0% 50.0%

Overall

<20

20-34

35-49

50-64

65-79

80+

Men

<20

20-34

35-49

50-64

65-79

80+

Women

<20

20-34

35-49

50-64

65-79

80+

Percentage

Age

Gro

up

s

Women

Men

Overall

COLORECTAL CANCER


1.8% (p<0.05)

1.5% (p<0.05) 1.7% (p<0.05)

0.2% (p<0.05)

LUNG CANCER


-1.3% (p<0.05) -1.7% (p<0.05)

PROSTATE CANCER


1.5% (p<0.05)

-0.7% (p<0.05)

BREAST CANCER


1.3% (p<0.05)

-0.1% p<0.05)

CERVICAL CANCER


-1.2% (p<0.05)

-2.3% (p<0.05)

UTERINE CANCER


2.1% (p<0.05)

-0.8% (p<0.05)

THYROID CANCER


9% (p<0.05)

11% (p<0.05) -4% (p<0.05) Males -1% (p<0.05) Females

Age-Adjusted Cancer Incidence Rates by Municipality in Puerto Rico, 2005-2009

Incidence Rate per 100,000

All Sites Both Sexes


Prostate

Breast (Females)



Socioeconomic Position Index (SEP)

Socioeconomic Position (SEP) index at municipality level: Puerto Rico, 2000

Socieconomic Position Index (SEP)

SEP 1r

SEP 2

SEP 3

SEP 4

SEP 5s

r SEP=1 counties with lowest socioeconomic position (highest socioeconomic deprivation). s SEP=5 counties with highest socioeconomic position (lowest socioeconomic deprivation).

Age-standardized incidence for different cancer sites by SEP index (SEP=1r vs SEP=5s), Puerto Rico 2005-2009*

Rates are per 100,000 and age-adjusted to the 2000 P.R. - User standard; Confidence intervals (Tiwari mod) are 95% for rates and ratios.

# The rate ratio indicates that the rate is significantly different than the rate for SEP 5 (p<0.05). * Statistics that include the year 2009 are preliminary.

Specific Sites Sep5 Sep1 Rate Ratio Ratio P-Value

All Sites 284.7 255.3# 0.8968 0.0000

Esophagus 2.7 5.3# 1.9591 0.0000

Stomach 6.6 9.6# 1.4536 0.0001

Colon and Rectum 38.1 32.4# 0.8518 0.0004

Liver and Intrahepatic Bile Duct 7.1 5.7# 0.8027 0.0467

Pancreas 5.3 4.0# 0.7464 0.0238

Breast (females) 77.5 61.1# 0.7881 0.0000

Prostate (males) 137.1 123.8# 0.9029 0.0032

Kidney and Renal Pelvis 6.2 3.8# 0.606 0.0000

Thyroid 15.6 10.4# 0.6658 0.0000

Non-Hodgkin Lymphoma 10.6 8.7# 0.8195 0.0253

Age-adjusted incidence rates of Childhood Cancers (0-19 years) by ICCC Categories and Sex, Puerto Rico, 2005-2009*

Cancer Types

Total Male Female

Rate Count Percent Rate Count Rate Count

All Cancer Combined 12.0 669 100.00% 12.8 364 11.1 305

I Leukemias 2.9 160 23.9% 3.3 93 2.4 67

II Lymphomas 1.7 93 13.9% 2.2 63 1.1 30

III CNS Neoplasms 2.3 126 18.8% 2.7 77 1.8 49

IV SNS Tumors 0.6 34 5.1% 0.6 16 0.7 18

V Retinoblastoma 0.1 8 1.2% 0.1 -- 0.2 6

VI Renal Tumors 0.5 29 4.3% 0.4 12 0.6 17

VII Hepatic Tumors 0.2 9 1.3% 0.2 6 0.1 --

VIII Bone Tumors 0.8 44 6.6% 0.8 22 0.8 22

IX Soft Tissue Sarcomas 0.8 44 6.6% 0.8 22 0.8 22

X Germ-Cell Neoplasm 0.7 40 6.0% 0.8 24 0.6 16

XI Carcinomas 1.3 75 11.2% 0.9 25 1.8 50

XII Other and Unspecified 0.1 6 0.9% 0.1 -- 0.1 -- Rates are per 100,000 and age-adjusted to the 2000 PR - User standard. *Statistics that includes the year 2009 are preliminary. --Site specific counts <6 are not presented to ensure confidentiality.

Thank you

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