Last Reviewed: Nov. 28, 2023

Pennsylvania Cancer Registry

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Registry Data

Population Data

12,788,795Total Population Count
4.0%% of US Population
3.6%% of US Black Population
2.3%% of US API Population
0.0%% of US AI/AN* Population
1.6%% of US Hispanic Population
3.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

79,777Malignant Cases
4.7%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1985

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

1985

Data linked with medicare

Years included in CINA Deluxe

1995-2015

CINA survial years

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#14)

Study Participation

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

Yes

Type of request forms required

Separate IRB and Registry forms

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

Data request submission first step

Cancer Registry

Local/State IRB Review Requirements

IRB of record

Pennsylvania Department of Health Institutional Review Board (IRB

IRB Federalwide Assurance Number

FWA00023407

IRB forms available online

Yes

IRB homepage URL

https://www.health.pa.gov/topics/Research/Pages/IRB.aspx

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://www.pa.gov/en/services/health/request-access-to-protected-data-for-government-public-health-researchers.html	PA DOH application and User's Guide

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
http://RA-DHPROTECTEDDATA@pa.gov	email to request User's Guide to Protected Data

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

URL	Description
http://RA-DHPROTECTEDDATA@pa.gov	email to request

Process

Processing timeframe for linkage studies and de-identified data release

Greater than 6 months

Processing timeframe for patient contact studies

Greater than 6 months

Human Subjects Protection Training Requirements

Collaboration with local researcher required

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

be specific in what data they need and why they needed. Just don't ask for everything.

Procedures are likely to be revised within the next year

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

Publication review requirements

N/A

Data use agreement renewal requirements

None

IRB progress report requirements

when IRB expires updated IRB is needed if study is still on-going and if updated data are needed.

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

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Governmental requests

Registry data payment is due

After researcher receives data

Registry fee structure summary

$200 for first year of data, $100 for each after that. $.005 per record requested to link

Registry fee structure URL

IRB fees

IRB review fees required

Pennsylvania CaRI Database Information