New York State Cancer Registry - CaRI Database

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:	Researcher should submit request to Cancer Registry Cancer Registry via Email to: John Doe Registry Director 101 Home Road, Suite 200B Washington, DC, 11111 Email: Phone: 111-111-1111
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	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