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New York CaRI Database Information

Last Reviewed: Dec. 9, 2021

New York State Cancer Registry

Registry jurisdiction New York
Type of review required Both local/state IRB review and Registry review
Type of request forms required Registry form for both reviews
IRB of record New York State Dept of Hlth
How to submit request:
Initial required documentation

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Step-by-Step data request submission process

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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.
Processing timeframe
  • For linkage studies and de-identified data release: 3-6 months
  • For patient contact studies: 3-6 months
Patient Consent and Contact Procedures
  • Passive consent with the physician is required before patient contact. Physician consent is obtained by: Registry
  • Patient consent is obtained by: Registry
Pediatric research considerations None
Registry Fees 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.

IRB Fees No IRB fees
Collaboration with local researcher required No