Last Reviewed: Feb. 8, 2019

District of Columbia Cancer Registry (DCCR)

Print Full Details

Registry Data

Population Data

683,999Total Population Count
0.2%% of US Population
0.7%% of US Black Population
0.2%% of US API Population
0.0%% of US AI/AN* Population
0.1%% of US Hispanic Population
0.3%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

2,867Malignant Cases
0.2%% of US Malignant Cases

Registry type

NPCR

Year registry became population-based

1996

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

1996

Data linked with medicare

Years included in CINA Deluxe

1997-2001, 2003-2014

CINA survial years

Participates in the National Interstate Data Exchange Agreement program

Yes (Restrictions - https://www.naaccr.org/national-interstate-data-exchange-agreement/#29)

Study Participation

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

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

Yes

Data request submission first step

Both Registry and IRB

Local/State IRB Review Requirements

IRB of record

Yes

IRB Federalwide Assurance Number

00003034

IRB forms available online

Yes

IRB homepage URL

https://dchealth.dc.gov/service/institutional-review-board-public-health

Method to submit IRB forms

IRB meeting frequency

Quarterly

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
https://dchealth.dc.gov/service/cancer-registry-0	DCCR web page

Method to submit Registry data request

Registry review meeting frequency

As needed

Registry Data Release Policy/Procedure URL(s)

URL	Description
https://dchealth.dc.gov/service/cancer-registry-0	DCCR web page

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

URL	Description
https://dchealth.dc.gov/service/cancer-registry-0	DCCR web page

Process

Processing timeframe for linkage studies and de-identified data release

1 - 3 months

Processing timeframe for patient contact studies

Greater than 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

- Include all data elements needed for the research

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); Other (please contact us)

Is notification of data destruction required

Yes

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

Data destruction notification can be sent by email and should include how data was destroyed.

Publication review requirements

90 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

More than 60 days

Participates in VPR

Consent Requirements

Physician consent is required before patient contact

Depends on Study

Physician consent is obtained by

Researcher

Patient consent is obtained by

Researcher

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

IRB fees

IRB review fees required

District of Columbia CaRI Database Information