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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
Puerto Rico Central Cancer Registry
• 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
PUERTO RICO CENTRAL CANCER REGISTRY
PUERTO RICO CENTRAL CANCER REGISTRY
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.
Puerto Rico Central Cancer Registry
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
PUERTO RICO CENTRAL CANCER REGISTRY
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
PUERTO RICO CENTRAL CANCER REGISTRY
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
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]
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) % %
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 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%
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
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
*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)
Incidence for All Types of Cancer by Age group and Sex, Puerto Rico 2005-2009*
*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)
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
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
1.8% (p<0.05)
1.5% (p<0.05) 1.7% (p<0.05)
0.2% (p<0.05)
LUNG 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
-1.3% (p<0.05) -1.7% (p<0.05)
PROSTATE 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
1.5% (p<0.05)
-0.7% (p<0.05)
BREAST 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
1.3% (p<0.05)
-0.1% p<0.05)
CERVICAL 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
-1.2% (p<0.05)
-2.3% (p<0.05)
UTERINE 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
2.1% (p<0.05)
-0.8% (p<0.05)
THYROID 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
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
Incidence Rate per 100,000
Prostate
Breast (Females)
Incidence Rate per 100,000
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
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.
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