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Puerto Rico Central Cancer Registry

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Registry Data

Population Data

3,473,181Total Population Count
1.1%% of US Population
0.0%% of US Black Population
0.0%% of US API Population
0.0%% of US AI/AN* Population
0.0%% of US Hispanic Population
0.0%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

16,001Malignant Cases
1.0%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1997

First year high quality, population-based data available for research

1997

Data linked with medicare

Years included in CINA Deluxe

2008-2015

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#13)

Study Participation

Research Type	Experience with Studies	Interested in Studies
Case Contacts Studies	Yes	No
Geospatial Studies	No	Yes
Linkage Studies	Yes	No
Rapid Case Ascertainment Studies	Yes	No
Re-Abstracting/Patterns of Care Studies	Yes	No
Survival Studies	Yes	No

Contact Information

Required Review(s) and Initial Contact

Type of review required

Both local/state IRB review and Registry review

Multiple local IRBs are required (e.g. Institutional registry and state registry)?

Type of request forms required

Separate IRB and Registry forms

Initial cancer registry contact/discussion required prior to submitting (or completing) application

Yes

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

The Comprehensive Cancer Center-University of Puerto Rico Institutional Review Board

IRB Federalwide Assurance Number

FWA00021307

IRB forms available online

Yes

IRB homepage URL

http://www.cccupr.org/investigacion/institutional-review-board/

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
http://www.rcpr.org/Datos-de-Cancer/Acceso-a-Datos	Request Forms

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
http://www.rcpr.org/Portals/0/Solicitud%20de%20Datos/Pol%C3%ADtica%20para%20la%20Divulgaci%C3%B3n%20de%20Informaci%C3%B3n%20del%20RCCPR_20141208.pdf	Policy and procedures

Registry Data Use (or Research) Agreement URL(s)

URL	Description
http://rcpr.org/Datos-de-C%C3%A1ncer/Acceso-a-Datos	Agreements forms

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

3-6 months

Human Subjects Protection Training Requirements

Yes

Collaboration with local researcher required

Yes

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

Procedures are likely to be revised within the next year

Yes

Data Use and Renewal Requirements

When must study investigators destroy registry data

At end of study; As noted in approved documents (e.g. IRB/Registry Application, DUA, Confidentiality Agreement)

Is notification of data destruction required

Yes

Describe what to include in the notification or provide the URL for a specific form

Email with evidence of Data destruction (log, report, etc.)

Publication review requirements

30 days in advance

Data use agreement renewal requirements

Annual

IRB progress report requirements

Annual

How far in advance of IRB expiration must IRB renewal be submitted

30 days

Participates in VPR

Yes

Consent Requirements

Physician consent is required before patient contact

Depends on Study

Physician consent is obtained by

Depends on Study

Patient consent is obtained by

Depends on Study

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Policy to be defined

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Policy to be defined

Registry fee structure URL

IRB fees

IRB review fees required

Yes

Irb data fee exceptions

Policy to be defined

IRB fee amounts

To be defined

Puerto Rico CaRI Database Information

Puerto Rico Central Cancer Registry

Registry Data

Study Participation

Contact Information

Required Review(s) and Initial Contact

Local/State IRB Review Requirements

Registry Review Requirements

Process

Data Use and Renewal Requirements

Consent Requirements

Registry fees

IRB fees