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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 Royale Anne Hinds (rahinds@naaccr.org) at 217-698-0188.

NIDEA
RegistryDate SignedRestrictionsPermissionsContact Person Email
Alabama Statewide Cancer Registry11/1/2011 7 xuejun.shen@adph.state.al.us
Alaska Cancer Registry3/2/2011 lynn.reaume@alaska.gov
Arizona Cancer Registry  
Arkansas Central Cancer Registry  
California Cancer Registry  
Cancer Data Registry of Idaho5/4/2011 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 Registry  
Illinois State Cancer Registry  
Indiana State Cancer Registry  
Kansas Cancer Registry  
Kentucky Cancer Registry3/29/2011 3 rmaynard@kcr.uky.edu
Los Angeles Cancer Surveillance Program  
Louisiana Tumor Registry  
Maine Cancer Registry  
Maryland Cancer Registry  
Massachusetts Cancer Registry3/24/2011 2 susan.gershman@state.ma.us
Metropolitan Detroit  
Michigan Cancer Surveillance Program3/7/2011 1 copelandg@michigan.gov
Minnesota Cancer Surveillance System  
Mississippi Cancer Registry3/22/2011 dbrogers@umc.edu
Missouri Cancer Registry  
Montana Central Tumor Registry3/8/2011 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 Registry  
North Dakota Statewide Cancer Registry3/4/2011 mknell@nd.gov
Ohio Cancer Incidence Surveillance System  
Oklahoma Central Cancer Registry12/30/2011 9 anneb@health.ok.gov
Oregon State Cancer Registry  
Pennsylvania Cancer Registry  
Puerto Rico Central Cancer Registry  
Rhode Island Cancer Registry  
Seattle Cancer Surveillance System  
SEER Alaska Native Tumor Registry  
South Carolina Central Cancer Registry  
South Dakota Cancer Registry  
State Health Registry of Iowa  
Tennessee Cancer Registry  
Texas Cancer Registry8/8/2011 6 melanie.williams@dshs.state.tx.us
Utah Cancer Registry11/21/2011 8 rosemary.dibble@hsc.utah.edu
Vermont Cancer Registry  
Virginia Cancer Registry8/3/2011 5 jim.martin@vdh.virginia.gov
Washington State Cancer Registry  
West Virginia Cancer Registry  
Wisconsin Cancer Reporting System  
Wyoming Cancer Surveillance Program  

Restrictions

Restriction 1: Cancer case information supplied by the Michigan registry can be used for any registry related purpose as outlined above but release of identifiable or potentially re-identifiable Michigan data is not permitted without the prior written approval of the Michigan registry. This includes release for research as listed in item 8c of the standard Agreement. This requirement is pursuant to Michigan Administrative Rule 325.9056.

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 3: The secondary release of the Kentucky Cancer Registry's records that contain identifiable patient information is prohibited by this agreement if there is the potential for direct patient contact resulting from the secondary release. If a research request for a record sent by the Kentucky Cancer Registry (KCR) might result in direct patient contact, then KCR must be notified and must give written consent before the receiving registry may release the records sent by KCR.

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 research conducted by receiving registry without prior approval 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.