Last Reviewed: Nov. 29, 2022

Maryland Cancer Registry

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Registry Data

Population Data

6,001,167Total Population Count
1.9%% of US Population
4.2%% of US Black Population
2.1%% of US API Population
0.0%% of US AI/AN* Population
1.0%% of US Hispanic Population
1.8%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

31,791Malignant Cases
1.9%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1992

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

1999

Data linked with medicare

Years included in CINA Deluxe

1999-2015

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/#31)

Study Participation

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

Both Registry and IRB

Local/State IRB Review Requirements

IRB of record

Maryland Department of Health IRB

IRB Federalwide Assurance Number

FWA00002313

IRB forms available online

Yes

IRB homepage URL

https://health.maryland.gov/oig/irb/Pages/IRB.aspx

Method to submit IRB forms

IRB meeting frequency

Monthly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://phpa.health.maryland.gov/cancer/SiteAssets/Pages/mcr_data/MCRDataRequestFormMDH-page%201.pdf	Data request form

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://phpa.health.maryland.gov/cancer/SiteAssets/Pages/mcr_data/MCR%20DataUseManual%20and%20Procedures07_2016%20(1).pdf

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

URL	Description
https://phpa.health.maryland.gov/cancer/SiteAssets/Pages/mcr_data/MCR%20DataUseManual%20and%20Procedures07_2016%20(1).pdf	DUA example
https://health.maryland.gov/iac/Pages/sdi.aspx	Strategic Data Initiative (SDI)

Process

Processing timeframe for linkage studies and de-identified data release

Less than 1 month

Processing timeframe for patient contact studies

3-6 months

Human Subjects Protection Training Requirements

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

Data Use and Renewal Requirements

When must study investigators destroy registry data

Annual justification to retain data is required; 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

https://phpa.health.maryland.gov/cancer/SiteAssets/Pages/mcr_data/MCR%20DataUseManual%20and%20Procedures07_2016%20(1).pdf

Publication review requirements

30 days in advance

Data use agreement renewal requirements

Usually annual but sometimes we will allow to the length of funding

IRB progress report requirements

depends on the study

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

Depends on Study

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Maryland does not currently charge for data but is allowed by regulations.

Registry data payment is due

Before researcher receives data

Registry fee structure summary

Currently the MCR does not charge. It could charge, after a two hour set-up, the number of hours preparing the data times the cost of those who worked on the preparation.

Registry fee structure URL

IRB fees

IRB review fees required

Maryland CaRI Database Information