Skip to Main Content

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

Login is required to access this information. Log In with your MyNAACCR account.

Step-by-Step data request submission process

Login is required to access this information. Log In with your MyNAACCR account.

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 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 $ 7,000
5. 250,000 – 499,999 $ 8,500
6. 500,000 – 999,999 $10,000
7. More than 1,000,000 $15,000

For very small cohorts, involving individual case look-ups, the Registry fee will be $14 per record plus $150.

IRB Fees No IRB fees
Collaboration with local researcher required No