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National Interstate Data Exchange Agreement

Capturing all newly diagnosed cancer cases is essential to any central cancer registry. Sometimes patients are diagnosed and/or treated in an area that is different from their residence, and agreements must be made between registries to share data. NAACCR has developed a model National Interstate Data Exchange Agreement which will allow states to exchange data on cases diagnosed or treated in other areas. This single agreement will take the place of multiple interstate data exchange agreements. See the list below of the states that have signed the agreement.

Town Meeting

A Town Meeting was held on May 21, 2010 to discuss the proposed National Interstate Data Exchange Agreement. To view a recording of this webinar and the associated Q&A session, please visit the Town Meetings page.

Contact

Signed National Interstate Data Exchange agreements should be faxed to NAACCR at 217-698-0188.

NIDEA
RegistryDate SignedRestrictionsPermissionsContact Person Email
Alabama Statewide Cancer Registry5/1/2013 7 xuejun.shen@adph.state.al.us
Alaska Cancer Registry3/18/2013 judy.brockhouse@alaska.gov
Arizona Cancer Registry  
Arkansas Central Cancer Registry  
California Cancer Registry  
Cancer Data Registry of Idaho4/2/2013 4 djozwik@teamiha.org
Cancer Registries of Central and Northern California  
Cherokee Nation Cancer Registry  
Colorado Central Cancer Registry  
Connecticut Tumor Registry  
Delaware Cancer Registry  
Desert Sierra Cancer Surveillance Program  
District of Columbia Cancer Registry (DCCR)  
Florida Cancer Data System  
Georgia Department of Community Health  
Georgia SEER Registry  
Greater Bay Area Cancer Registry  
Guam Cancer Registry  
Hawaii Tumor Registry3/18/2013 michael@cc.hawaii.edu
Illinois State Cancer Registry  
Indiana State Cancer Registry  
Kansas Cancer Registry  
Kentucky Cancer Registry3/26/2013 tbrand@kcr.uky.edu
Los Angeles Cancer Surveillance Program  
Louisiana Tumor Registry  
Maine Cancer Registry  
Maryland Cancer Registry  
Massachusetts Cancer Registry3/28/2013 2 susan.gershman@state.ma.us
Metropolitan Detroit  
Michigan Cancer Surveillance Program3/18/2013 1 silvaw@michigan.gov
Minnesota Cancer Surveillance System  
Mississippi Cancer Registry5/2/2013 12 dbrogers@umc.edu
Missouri Cancer Registry  
Montana Central Tumor Registry3/15/2013 dlemons@mt.gov
Nebraska Cancer Registry  
Nevada Statewide Cancer Registry  
New Hampshire State Cancer Registry  
New Jersey State Cancer Registry  
New Mexico Tumor Registry  
New York State Cancer Registry  
North Carolina Central Cancer Registry3/28/2013 11 chandrika.rao@dhhs.nc.gov
North Dakota Statewide Cancer Registry3/21/2013 yun.zheng@med.und.edu
Ohio Cancer Incidence Surveillance System3/21/2014 Lynn.Giljahn@odh.ohio.gov
Oklahoma Central Cancer Registry3/21/2014 9 AnneB@health.ok.gov
Oregon State Cancer Registry  
Pennsylvania Cancer Registry8/6/2013 14 rootto@pa.gov
Puerto Rico Central Cancer Registry5/16/2013 13 dzavala@rcpr.org
Rhode Island Cancer Registry  
Seattle Cancer Surveillance System  
SEER Alaska Native Tumor Registry  
South Carolina Central Cancer Registry9/16/2013 15 bolicks@dhec.sc.gov
South Dakota Cancer Registry  
State Health Registry of Iowa  
Tennessee Cancer Registry  
Texas Cancer Registry4/17/2013 6 melanie.williams@dshs.state.tx.us
Utah Cancer Registry11/21/2011 8 rosemary.dibble@hsc.utah.edu
Vermont Cancer Registry  
Virginia Cancer Registry3/15/2013 5 jim.martin@vdh.virginia.gov
Washington State Cancer Registry  
West Virginia Cancer Registry  
Wisconsin Cancer Reporting System  
Wyoming Cancer Surveillance Program10/5/2012 10 julia.espinoza@wyo.gov

Restrictions

Restriction 1: Research efforts as described in item 7c or other third party data releases not specifically covered under item 7 that involve the release of identifiable or potentially identifiable data received from Michigan to persons outside the receiving registry are not permitted unless approved in writing by the MCSP. Researchers in such cases must submit an application and their research protocol to the MCSP for review and approval, as required by Michigan regulations [R 325.9054(5)]

Restriction 2: All public health research involving access to Massachusetts Department of Public Health (MDPH) information that would include cancer diagnoses made in Massachusetts facilities to residents of other states must be reviewed by the Massachusetts Department of Public Health's Research and Data Access Review (RaDAR) IRB.

Restriction 4: Data received from Idaho shall not be included in research conducted by receiving registry without prior approval from the Cancer Data Registry of Idaho (CDRI).

Restriction 5: Release of Virginia Cancer Registry (VCR) records containing identifiable patient information is not permitted if direct patient contact may result from the release. If a research request might result in direct contact with a patient whose information VCR provided, the receiving registry must notify VCR and receive written consent from VCR before releasing such records.

Restriction 6: In no event shall the Texas Cancer Registry bear liability for loss, expense, attorneys' fees, or claims for injury or damages arising out of acts of omissions in the performance of this agreement on the part of a Receiving Registry.

Restriction 7: Data received from Alabama shall not be included in any research conducted by the receiving registry without prior approval in writing from the Alabama Statewide Cancer Registry (ASCR).

Restriction 8: Please copy and paste the following URL to view the Utah Cancer Registy's full addendum: http://www.naaccr.org/LinkClick.aspx?fileticket=uRMriHvEp5c%3d&tabid=161&mid=523

Restriction 9: Any data supplied by the Oklahoma Central Cancer Registry (OCCR) which would involve contacting patients must have prior approval from the OCCR.

Restriction 10: Please copy and paste the following URL to view Wyoming Cancer Registry's full addendum http://www.naaccr.org/LinkClick.aspx?fileticket=ync7FcGZUJg%3d&tabid=161&mid=523

Restriction 11: Cancer case information supplied by the North Carolina Central Cancer Registry (NCCCR) can be used for any registry related purpose as outlined above but release of identifiable or potentially re-identifiable NCCCR data is not permitted without the prior written approval of the NCCCR registry. This includes release for research as listed in item 7c of the standard Agreement.

Restriction 12: 10. The Receiving Registry will notify the Sending Registry if, in the conduct of approved research or other activities involving the Sending Registry’s data, there is a breach or misuse of a cancer patient’s identifying information or potentially identifying information. Should a breach or misuse take place, the Receiving Registry must notify the Sending Registry in writing within forty-eight (48) hours of the release of the data, and shall take all feasible measures to mitigate loss or damages related to such breach or misuse, including, but not limited to, bearing sole responsibility for reasonable costs, including attorneys’ fees, related to mitigating the breach or misuse to the extent authorized by Mississippi state law.

Restriction 13: Cancer case information supplied by the Puerto Rico Central Cancer Registry (PRCCR) can be used for any registry related purpose as outlined above but release of identifiable or potentially re-identifiable PRCCR data is not permitted without the prior written approval of the PRCCR registry. This includes release for research as listed in item 7c of the standard Agreement.

Restriction 14: Individual identifiable data exchanged as a result of this agreement shall not be released for research without prior written approval from the Pennsylvania Cancer Registry. Individual identifiable data exchanged as a result of this agreement shall not be released to other central registry entities in the Receiving Registry's state without prior written approval from the Pennsylvania Cancer Registry.

Restriction 15: Cancer case information supplied by the South Carolina Central Cancer Registry (SCCCR) can be used for any registry-related purpose as outlined above, however release of identifiable or potentially re-identifiable SCCCR data is not permitted without the prior written approval of the SCCCR. This includes release for research as listed in item 7c of the standard Agreement.