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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.

Map of participants
Blue: Registry has signed the Interstate Data Exchange Agreement
Green: Registry has not 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.

Registry Date Signed Restrictions Data Exchange Agreement Contact Person Email
Alabama Statewide Cancer Registry 8/26/2016 7 Click here tara.freeman@adph.state.al.us
Alaska Cancer Registry 3/18/2013
Click here
judy.brockhouse@alaska.gov
Arizona Cancer Registry  


Arkansas Central Cancer Registry 11/13/2014
Click here
kevin.rowell@arkansas.gov 
California Cancer Registry 2/5/2016 28 Click here
DPadmanaban@ccr.ca.gov
Cancer Data Registry of Idaho 4/2/2013 4 Click here
djozwik@teamiha.org
Colorado Central Cancer Registry 3/16/2015
24
Click here
randi.rycroft@state.co.us
Connecticut Tumor Registry 8/25/2014
17
Click here
cathryn.phillips@ct.gov
Delaware Cancer Registry 1/21/2015
20
Click here
Betsy.Cromartie@state.de.us
District of Columbia Cancer Registry (DCCR) 2/11/2016
29
Click here
alicia.vargas@dc.gov
Florida Cancer Data System


Georgia Department of Public Health  3/18/2016
Click here
rana.bayakly@dph.ga.gov
Guam Cancer Registry 11/17/2014
Click here
renatauog@gmail.com
Hawaii Tumor Registry 3/18/2013
Click here
michael@cc.hawaii.edu
Illinois State Cancer Registry


Indiana State Cancer Registry 6/30/2014
Click here
lruppert@isdh.in.gov
Kansas Cancer Registry


Kentucky Cancer Registry 3/26/2013
Click here
tbrand@kcr.uky.edu
Louisiana Tumor Registry 10/15/2014
19
Click here
xwu@lsuhsc.edu
Maine Cancer Registry 5/2/2016 30 Click here katherine.boris@maine.gov
Maryland Cancer Registry 8/4/2016 31 Click here kimberly.stern@Maryland.gov
Massachusetts Cancer Registry 3/28/2013 2 Click here
susan.gershman@state.ma.us
Michigan Cancer Surveillance Program 3/18/2013
1
Click here
silvaw@michigan.gov
Minnesota Cancer Surveillance System



Mississippi Cancer Registry 5/2/2013 12 Click here dbrogers@umc.edu
Missouri Cancer Registry and Research Center


Montana Central Tumor Registry 3/15/2013
Click here
dlemons@mt.gov
Nebraska Cancer Registry 7/6/2015
25
Click here
Michelle.Hood@nebraska.gov
Nevada Statewide Cancer Registry


New Hampshire State Cancer Registry 7/15/2014
16
Click here
bruce.riddle@dartmouth.edu
New Jersey State Cancer Registry 10/8/2014
18
Click here
Antoinette.Stroup@doh.state.nj.us
New Mexico Tumor Registry



New York State Cancer Registry 9/30/2014
Click here
maria.schymura@health.ny.gov
North Carolina Central Cancer Registry 3/28/2013 
11
Click here
chandrika.rao@dhhs.nc.gov
North Dakota Statewide Cancer Registry 3/21/2013
Click here
yun.zheng@med.und.edu
Ohio Cancer Incidence Surveillance System 2/19/2014
Click here
Lynn.Giljahn@odh.ohio.gov
Oklahoma Central Cancer Registry 3/21/2014 9 Click here
RaffaellaE@health.ok.gov  
Oregon State Cancer Registry 7/7/2014
Click here
jeffrey.a.soule@state.or.us
Pennsylvania Cancer Registry 8/6/2013  14 Click here
rootto@pa.gov
Puerto Rico Central Cancer Registry 5/16/2013 13 Click here
dzavala@rcpr.org
Rhode Island Cancer Registry 11/13/2015
Click here
davidr@hari.org
South Carolina Central Cancer Registry 9/16/2013 15 Click here
bolicks@dhec.sc.gov
South Dakota Cancer Registry



State Health Registry of Iowa 4/7/2016
Click here kathleen-mckeen@uiowa.edu
Tennessee Cancer Registry 8/3/2015 27 Click here
martin.whiteside@tn.gov
Texas Cancer Registry 4/17/2013 6 Click here
melanie.williams@dshs.state.tx.us
Utah Cancer Registry 11/21/2011 8 Click here
SuAnn.McFadden@hsc.utah.edu
Vermont Cancer Registry 2/18/2015  23 Click here
alison.johnson@state.vt.us
Virgin Islands Cancer Registry
Virginia Cancer Registry 3/15/2013 5 Click here
jim.martin@vdh.virginia.gov
Washington State Cancer Registry 7/27/2015 26 Click here
Riley.Peters@doh.wa.gov or danielle.good@doh.wa.gov
West Virginia Cancer Registry 1/13/2015
22
Click here
Myra.N.Fernatt@wv.gov
Wisconsin Cancer Reporting System 1/21/2015
21
Click here
Laura.Stephenson@dhs.wisconsin.gov
Wyoming Cancer Surveillance Program 10/5/2012
10
Click here
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.

Restriction 16: This agrement for data release and use is limited to the States of Vermont, Massachusetts, New York, Florida, Maine, Connecticut, and Rhode Island.

Restriction 17: 1: Cancer case information supplied by the Connecticut Tumor Registry (CTR) can be used for any registry related purpose as outlined above, but release of identifiable or potentially re-identifiable CTR data is not permitted without the prior written approval of the CTR. This includes release for research as listed in item 7c of the Standard Agreement. 2: The Receiving Registry will notify the Connecticut Tumor Registry (CTR) if, in the conduct of approved research or other activities involving the CTR' 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 CTR 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 Connecticut state statute.

Restriction 18: Cancer case information supplied by the New Jersey State Cancer Registry (NJSCR) can be used for any registry related purpose as outlined in paragraph 7 above but release of identifiable data is not permitted without prior written approval of the NJSCR. This includes release for research as described in paragraph 7c above. In no event shall the NJSCR bear liability of loss, expense, attorneys’ fees, or claims for injury or damages arising out of the acts or omissions in the performance of this agreement on the part of a Receiving Registry.

Restriction 19: 1:Cancer case information supplied by Louisiana Tumor Registry (LTR) can be used for any registry related purpose as outlined above, but release of identifiable or potentially re-identifiable LTR data is not permitted without the prior written approval of the LTR. This includes release for research as listed in item 7c of the Standard Agreement. 2: The Receiving Registry will notify the LTR if, in the conduct of approved research or other activities involving the LTR'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 LTR in writing within forty-eight (48) hours of the release of the data, and shall take all feasible measures to mitigate the 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 Louisiana state law.

Restriction 20: 1. A Business Associates Agreement (BAA) is required prior to first data exchange with a participating State Central Cancer Registry. 2. Identifiable or potentially identifiable data received from Delaware shall not be released for research without prior approval in writing from the Delaware Cancer Registry. This includes release for research as listed in item 7c of the standard Agreement.

Restriction 21: 1. Research efforts as described in 7c not specifically covered under item 7 that involve the release of identifiable or potentially identifiable data from Wisconsin to persons outside the Receiving Registry are not permitted unless approved in writing by the Office of Health Informatics Research Review Board. Researchers, in such cases, must submit an application and their research protocol to the Wisconsin Cancer Reporting System, following the procedures outlined in the Cancer Research Application Manual: http://www.dhs.wisconsin.gov/publications/P0/P00625.pdf. 2. In no event shall the Department of Health Services 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. 3. Number 9 of this agreement is amended as follows: “All officers, agents and employees shall keep all such data strictly confidential; and that the Receiving Registry shall communicate the requirements of this Agreement to all officers, agents, and employees, shall discipline all persons who may violate the requirements of this Agreement, and shall notify the Sending Registry in writing within two working days (48 hours) of any violation of this Agreement, including full details of the violation and corrective actions to be taken as permitted by its employment policies.”

Restriction 22: Release of protected health information (PHI) or personally identifiable information (PII) received from the West Virginia Cancer Registry (WVCR) to persons outside of the Receiving Registry or for any use not consistent with this agreement is not permitted without prior written approval of WVCR.

Restriction 23: Data received from Vermont shall not be included in research conducted by the receiving registry without prior written approval from the Vermont Cancer Registry. “Identifiable information” shall be defined as in HIPAA and shall also include the following pursuant to 18 V.S.A. 154, all identifying information on the health care provider, or health care facility contained in the records. The laws and the public policy of the State of Vermont prohibit the State from agreeing to indemnify contractors and other parties which would include a Receiving registry. To the extent that this document expressly provides for or implies indemnification of the Receiving registry or other parties, such sections shall be waived and shall have no force and effect with respect to the State of Vermont.

Restriction 24: 1. Cancer case information supplied by the Colorado Central Cancer Registry (CCCR) can be used for any registry related purpose as outlined in paragraph 7 above but release of identifiable data is not permitted without prior written approval of the CCCR. This includes release for research as described in paragraph 7c above. 2. In no event shall the Colorado Central Cancer Registry (CCCR) 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 25: The Receiving Registry shall not contact a patient on the Nebraska Cancer Registry or such patient's family unless (1) the Receiving Registry submits written request to the Nebraska Cancer Registry for such contact, and (2) the Nebraska Cancer Registry has first obtained the permission of such patient or patient's family.

Restriction 26: Please see addendum to agreements beginning on page 4 of the Interstate Data Agreement http://www.naaccr.org/LinkClick.aspx?fileticket=qndEnHFMxb4%3d&tabid=161&mid=523

Restriction 27: Cancer case information supplied by the Tennessee Department of Health (TDH) can be used for any registry-related purpose as outlined above, but release of identifiable or potentially re-identifiable TDH data is not permitted without the prior written approval of the TDH. This includes release for research as listed in item 7c of the Standard Agreement. Researchers seeking data with identifiers must submit their request to the TDH Institutional Review Board (IRB) through IRBNet or other mechanism available at the time of submission and approved by the TDH IRB. Secondly, the Receiving Registry will notify TDH if, in the conduct of approved research or other activities involving the TDH’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 TDH in writing within three (3) business days 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 Tennessee law.

Restriction 28: 1.Cancer case information supplied by the California Cancer Registry (CCR) can be used for any registry­related purpose as outlined above, but release of identifiable or potentially re-identifiable CCR data is not permitted without the prior written approval of the CCR. This includes release for research as listed in item 7c of the Standard Agreement. Researchers seeking data with identifiers must submit their request to the California Protection for Human Subjects (CPHS) lnstitutional Review Board (TRB) through CalPROTECTS or other mechanism available at the time of submission and approved by the CPHS IRB. Secondly, the Receiving Registry will notify CPHS if, in the conduct of approved research or other activities involving the CCR's data, there is a breach or misuse of a cancer patient's identifying infom1ation or potentially identifying infonnation. Should a breach or misuse take place, the Receiving Registry must notify the CCR according to item I 0. 2.Pursuant of the California Health and Safety Code section 103885, the receiving state shall not grant access to, disclose, admit, produce or otherwise make available any part of the CCR data in any civil, criminal, administrative, or other tribunal or court proceeding, whether voluntarily or under compulsion. The receiving state shall immediately notify the CCR Data Custodian and the Chief, Chronic Disease Surveillance and Research Branch, California Department of Public Health by telephone and fax of the receipt of any subpoena, discovery request, court order, search warrant or other form of compulsory legal process or threat of compulsory legal process in which CCR data and/or documents, data files or other materials containing CCR data are sought to be produced or examined. The receiving state shall immediately take all necessary legal action to oppose and resist any such compulsory legal process, e.g. file a motion to quash or written objections to a subpoena, or tile written objections to a discovery request and opposition to a motion to compel.

Restriction 29: • Data received from District of Columbia Cancer Registry (DCCR) shall not be included in research conducted by receiving registry without prior approval from DCCR. • Release of identifiable or potentially identifiable patient information is not permitted in the data exchange. • 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 twenty-four (24) 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 related to mitigating the breach or misuse of DCCR data. • The Receiving Registry shall indemnify and hold harmless the District of Columbia, its agents, officers and employees from any claim for loss. injury or damages arising out of acts of omissions in the performance of this Agreement on the part of a Receiving Registry. • The Receiving Registry shall use, restrict, safeguard and dispose of all information provided by DCCR to the Receiving Registry in accordance with all relevant federal and local statutes, regulations,policies including without limitation the Family Educational Rights and Privacy Act ("FERPA") (Pub.L. 90-247; 80 Stat. 783) and the Individuals with Disabilities Education Act ("IDEA") (Pyb, L, 21-230; 84 Stat, 191). The Receiving Registry acknowledges and agrees that all student health data is confidential and may not be released without appropriate written consent, except when reguired by law. • DCCR and the Receiving Registry and their respective agents. employees and other personnel shall abide by: (i) all applicable federal. state and local laws, rules, regulations, including but not limited to all Medicare and Medicade laws and regulations and all applicable laws and regulations under the Health Insurance Portability and Accountability Act (HIPAA): the Health Information Technology for Economic and Clinical Health Act and its implementing regulations and guidance issued by the Secretary of the Department of Health and Human Services and codified at 42 U. S.C.A. prec.§ 17901 (the HITECH Act") as the same may be amended from time to time (collectively. the "Regulation"); and the Data-Sharing and Information Coordination Amendment Act of 2010 (0.C, Law 18-273: D.C. Official Code §7-241 et seq.) and its implementing regulations and other federal and state regulations governing the confidentiality of health information. including without limitation mental health, substance abuse, and HIV-related information: and (ii) all applicable standards of any applicable accreditation organization.

Restriction 30: 1) To clarify, notwithstanding the multiple statements in this Agreement: Any case data sent by Maine to another state registry may not be used for research, unless the research has received written approval from the Maine Cancer Registry, and as appropriate, to include submission to the Maine Department of Health and Human Services, Institutional Review Board (IRB). The cost of consideration by the IRB must be paid by researcher. 2) While this Agreement as written is not time limited, it will be time limited in Maine. After five years from the date of execution, state data exchange will be suspended for evaluation.

Restriction 31: Maryland will only provide information concerning diagnosis and treatment of cancer occurring in non-residents and contained in the Maryland Cancer Registry, if the information pertains to residents of other states that agree to provide equivalent information to Maryland regarding Maryland residents, as is required by Md. Code Ann., Health-Gen.§ 18-203 and COMAR 10.14.0l.07B(3)(b).