Last Reviewed: Dec. 9, 2021

New York State Cancer Registry

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Registry Data

Population Data

19,611,813Total Population Count
6.1%% of US Population
8.0%% of US Black Population
8.7%% of US API Population
1.9%% of US AI/AN* Population
6.4%% of US Hispanic Population
14.6%% of US Hispanic Non-White Population

*CHSDA Counties only

Cancer Data

114,167Malignant Cases
6.7%% of US Malignant Cases

Registry type

NPCR/SEER

Year registry became population-based

1976

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

1995

Data linked with medicare

Yes

Years included in CINA Deluxe

1995-2015

CINA survial years

2008-2014

Participates in the National Interstate Data Exchange Agreement program

Yes

Study Participation

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

Registry form for both reviews

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

New York State Dept of Hlth

IRB Federalwide Assurance Number

FWA00003700

IRB forms available online

IRB homepage URL

https://www.health.ny.gov/professionals/irb/

Method to submit IRB forms

IRB meeting frequency

Every other month

Registry Review Requirements

Registry Data Request Form URL(s)

URL	Description
http://nyscr@health.ny.gov	General NYSCR mail for initial requests
http://tabassum.insaf@health.ny.gov.	The researcher first contacts Tabassum Insaf, the NY State Cancer Registry Director, at 518-474-2225 or by email at tabassum.insaf@health.ny.gov.

Method to submit Registry data request

Registry review meeting frequency

Monthly

Registry Data Release Policy/Procedure URL(s)

No URLs specified.

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

No URLs specified.

Process

Processing timeframe for linkage studies and de-identified data release

3-6 months

Processing timeframe for patient contact studies

3-6 months

Human Subjects Protection Training Requirements

Yes

Collaboration with local researcher required

Initial required documentation

Step-by-Step data request submission process

Other requirements and helpful information for researchers

If the study involves patient contact, Cancer Registry staff must first obtain patient consent, or if patient is too ill or deceased, next-of-kin consent, to release the patient’s name to the researcher.
Additional Cancer Registry requirements and charges may apply.
The Cancer Registry will first notify the physician, then they will notify the patient about the study and require patient consent to release name and address.
Patient release is not required for cohort studies that involve linkage to the Cancer Registry in order to ascertain cancer occurrence. However, if the study involves contacting individuals identified as having cancer through the linkage in order to obtain information regarding their cancer (e.g., risk factor information, medical record release, etc.), then patient release is required.

Procedures are likely to be revised within the next year

Yes

Data Use and Renewal Requirements

When must study investigators destroy registry data

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

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

Yes - Passive

Physician consent is obtained by

Registry

Patient consent is obtained by

Registry

Pediatric research special requirements

Registry fees

Registry fees are charged to obtain data

Yes

Registry data fee exceptions

Registry data payment is due

After researcher receives data

Registry fee structure summary

VPR studies
No charges for phase 1 study
Phase 2 linkage : $3000 flat fee for studies requiring no manual review
For studies requiring manual review: 3000$ flat fee +additional $14 per record after first 100 records

External research studies (e.g., non-VPR cohort linkages, or other studies involving new data match):

Number of
Records Total Service
Fee Charged
1. Fewer than 10,000 $ 3,000
2. 10,000 – 49,999 $ 4,500
3. 50,000 – 99,999 $ 6,000
4. 100,000 – 249, 999 $ 7,500
5. 250,000 – 499,999 $ 10,000
6. 500,000 – 999,999 $12,500
7. More than 1,000,000 $15,000

For studies requiring case listing only such as simple data pulls or those requiring SPARCS and/or vital records linkage only (without cohort matching): flat fee of $3000.
For very small cohorts, involving individual case look-ups, the Registry fee will be $14 per record plus $500 flat fee.
For Patient contact studies: Researcher needs to discuss structure of study with DOH researchers. Usually these would require that DOH researchers participate as active collaborators and external researcher will need to provide a subcontract to fund staff time and supplies for patient and physician mailing and follow up.
Repeat linkages are eligible for a 20% reduction, depending on the work involved.
Note: With the exception of patient contact studies, fee can be waived for active collaborations and/or when researcher cannot pay based on discussion with the NYS Cancer Registry’s Internal Peer Review Committee.

Registry fee structure URL

IRB fees

IRB review fees required

New York CaRI Database Information