Data Exchange Agreement

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.

The NAACCR Interstate Data Exchange (IDE) Guidelines provides population-based registries with operational guidelines to collect and exchange data on residents that are diagnosed or treated in another state. For the Interstate Data Exchange Guidelines, list of minimum data elements and edits,  and IDE Minimum Edits Metafile, go here.

Data Exchange Participants (current as of January 2020)

Blue: Registry has signed the Interstate Data Exchange Agreement

Green: Registry has not signed the agreement

*Note: The Virgin Islands is not reflected on this map. They will be added in the new version.

Contacts (Last Updated August 2021)

Signed Interstate Data Exchange Agreements should be emailed to NAACCR at Recinda Sherman.

Please Note: An updated interstate data exchange agreement was developed in July 2021. For registries still using the older version, their signed agreement is available as a PDF under the Data Exchange Agreement Column. Any relevant restrictions with the older agreement are identified by a number under the Restrictions column. Registries that have signed the updated July 2021 agreement will have their signed agreement available through the hyperlink on their registry name. Any restrictions to the updated agreement are identified by a letter under the Restrictions column.


Registry Date Signed/Updated Restrictions Data Exchange Agreement Contact
Alabama Statewide Cancer Registry 8/26/2016 7 Alabama Statewide Cancer Registry
Alaska Cancer Registry 7/23/2021 None July 2021 version
Arizona Cancer Registry 7/14/2017  32 Arizona Cancer Registry
Arkansas Central Cancer Registry 7/23/2021 None July 2021 version
Bermuda National Tumour Registry 1/07/2020 34 Bermuda National Tumour Registry
California Cancer Registry 2/5/2016 28 California Cancer Registry
Cancer Data Registry of Idaho 7/23/2021 None July 2021 version
Colorado Central Cancer Registry 7/23/2021
None
 July 2021 version
Connecticut Tumor Registry 7/23/2021
None
 July 2021 version
Delaware Cancer Registry 8/22/2018 Delaware Cancer Registry Xiomara.Garcia@delaware.gov
cc: -Wilhelmina.Ross@delaware.gov
District of Columbia Cancer Registry (DCCR) 2/11/2016 District of Columbia Cancer Registry (DCCR)
Florida Cancer Data System
Georgia Department of Public Health  7/23/2021 None  July 2021 version
Guam Cancer Registry 11/17/2014 Guam Cancer Registry
Hawaii Tumor Registry 7/23/2021 None  July 2021 version
Illinois State Cancer Registry
Indiana State Cancer Registry 7/23/2021 None July 2021 version sankumari@isdh.IN.gov
Kansas Cancer Registry
Kentucky Cancer Registry 3/26/2013 Kentucky Cancer Registry
Louisiana Tumor Registry 7/23/2021
None
July 2021 version
Maine Cancer Registry 09/22/2021 Yes July 2021 version
Maryland Cancer Registry 8/4/2016 31 Maryland Cancer Registry
Massachusetts Cancer Registry 7/27/2021 None July 2021 version
Michigan Cancer Surveillance Program 3/18/2013 Michigan Cancer Surveillance Program
Minnesota Cancer Surveillance System
Mississippi Cancer Registry 7/23/2021 None July 2021 version
Missouri Cancer Registry and Research Center 7/23/2021 None  July 2021 version stulgos@health.missouri.edu
Montana Central Tumor Registry 3/15/2013 Montana Central Tumor Registry
Nebraska Cancer Registry 7/6/2015 Nebraska Cancer Registry
Nevada Statewide Cancer Registry  3/30/2018 33 Ohio Cancer Incidence Surveillance System
New Hampshire State Cancer Registry 3/10/2020 New Hampshire State Cancer Registry
New Jersey State Cancer Registry 10/8/2014 New Jersey State Cancer Registry
New Mexico Tumor Registry
New York State Cancer Registry 7/23/2021 None July 2021 version
North Carolina Central Cancer Registry 3/28/2013 North Carolina Central Cancer Registry
North Dakota Statewide Cancer Registry 7/23/2021 None  July 2021 version
Ohio Cancer Incidence Surveillance System 2/19/2014 Ohio Cancer Incidence Surveillance System
Oklahoma Central Cancer Registry 11/22/2021 None July 2021 version
Oregon State Cancer Registry 7/23/2021 None July 2021 version
Pennsylvania Cancer Registry 8/6/2013 14 Pennsylvania Cancer Registry
Puerto Rico Central Cancer Registry 5/16/2013 13 Puerto Rico Central Cancer Registry
Rhode Island Cancer Registry 09/22/2021 None July 2021 version
South Carolina Central Cancer Registry 9/16/2013 15 State Health Registry of Iowa
South Dakota Cancer Registry
State Health Registry of Iowa 7/23/2021 None July 2021 version
Tennessee Cancer Registry 8/3/2015 27 Tennessee Cancer Registry
Texas Cancer Registry 4/17/2013 6 Texas Cancer Registry
Utah Cancer Registry 7/23/2021 None July 2021 version Carrie.Bateman@hsc.utah.edu
Vermont Cancer Registry 7/23/2021 Yes July 2021 version
Virgin Islands Cancer Registry 2/8/2018 Virgin Islands Registry
Virginia Cancer Registry 3/15/2013 5 Virginia Cancer Registry
Washington State Cancer Registry 7/27/2015 26 Washington State Cancer Registry or
West Virginia Cancer Registry 7/23/2021
None
July 2021 version
Wisconsin Cancer Reporting System 1/21/2015 Wisconsin Cancer Reporting System
Wyoming Cancer Surveillance Program 7/23/2021 None  July 2021 version

Restrictions

Updated 2021 Agreement Registry Specific Restrictions

 

RESTRICTIONS for agreements prior to July 2021

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)]

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.

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.

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).

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.

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.

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.

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.

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

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.

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.

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.”

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.

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.

Please see addendum to agreements beginning on page 4 of the Interstate Data Agreement here.

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.

  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.

Additional permissions and restrictions on the use of cancer registry information from this Trading Partner.

• 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.
• 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 applicable Medicare and
Medicaid 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 (D.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.

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).

  1. Cancer case information supplied by the Arizona Cancer Registry (ACR) can be used for any registry related purpose as outlined in the North American Association of Central Cancer Registries Agreement for Administering the Central Cancer Registry Inter-Registry Resident Data Exchange with the exception of 7.c. The re-lease of identifiable or potentially re-identifiable ACR data is not permitted without the prior written approval of the ACR. This includes release for research as listed in item 7.c of the inter-registry resident exchange standard agreement.
  2. The Receiving Registry shall indemnify, defend, save and hold harmless the State of Arizona,its departments, agencies, boards, commissions, universities and its officers, officials, agents,and employees (hereinafter referred to as “Indemnitee”) from and against any and all claims,actions, liabilities, damages, losses, or expenses (including court costs, attorneys’ fees, and costs of claim processing, investigation and litigation) (hereinafter referred to as “Claims”) for bodily injury or personal injury (including death), or loss or damage to tangible or intangible property caused, or alleged to be caused, in whole or in part, by the negligent or willful acts or omissions of Receiving Registry or any of its owners, officers, directors, agents, employees or subcontractors. This indemnity includes any claim or amount arising out of or recovered under the Workers’ Compensation Law or arising out of the failure of such Receiving Registry to conform to any federal, state or local law, statute, ordinance, rule, regulation or court decree. It is the specific intention of the parties that the Indemnitee shall, in all instances, except for Claims arising solely from the negligent or willful acts or omissions of the Indemnitee, be indemnified by the Receiving Registry from and against any and all claims. It is agreed that the Receiving Registry will beresponsible for primary loss investigation, defense and judgment costs where this indemnificationis applicable. The Receiving Registry agrees to waive all rights of subrogation against the State of Arizona, its officers, officials, agents and employees for losses arising from the performance ofthe inter-registry data exchange agreement on the part of the Receiving Registry.

Addendum to Trading Partner Agreement of Nevada. Additional permissions and restrictions on the use of cancer registry information from this Trading Partner.

Cancer case information supplied by the Nevada Cancer Registry (NCCR) can be used for any registry related purpose as outlined in the North American Association of Central Cancer Registries Agreement for Administering the Central Cancer Registry Inter­Registry Resident Data Exchange except for 7.c. The re-lease of identifiable or potentially re-identifiable NCCR data is not permitted without the prior written approval of the NCCR. This includes release for research as listed in item 7.c of the inter-registry resident exchange standard agreement.

The Receiving Registry shall indemnify, defend, save and hold harmless the State of Nevada, its departments, agencies, boards, commissions, universities and its officers, officials, agents, and employees (hereinafter referred to as “Indemnitee”) from and against any and all claims, actions, liabilities, damages, losses, or expenses (including court costs, attorneys’ fees, and costs of claim processing, investigation and litigation)

(hereinafter referred to as “Claims”) for bodily injury or personal injury (including death), or loss or damage to tangible or intangible property caused, or alleged to be caused, in whole or in part, by the negligent or willful acts or omissions of Receiving Registry or any of its owners, officers, directors, agents, employees or subcontractors. This indemnity includes any claim or amount arising out of or recovered under the Workers’ Compensation Law or arising out of the failure of such Receiving Registry to conform to any federal, state or local law, statute, ordinance, rule, regulation or court decree. It is the specific intention of the parties that the Indemnitee shall, in all instances, except for Claims arising solely from the negligent or willful acts or omissions of the Indemnitee, be indemnified by the Receiving Registry from and against any and all claims. It is agreed that the Receiving Registry will be responsible for primary loss investigation, defense and judgment costs where this indemnification is applicable. The Receiving Registry agrees to waive all rights of subrogation against the State of Nevada, its officers, officials, agents and employees for losses arising from the performance of the inter-registry data exchange agreement on the part of the Receiving Registry.

Authority and Legal Requirements

NRS 457.260 Publication of reports; provision of data.

  1. The Division shall publish reports based upon the material obtained pursuant to NRS 457.230, 457.240 and 457.250 and shall make other appropriate uses of the material to report and assess trends in the incidence of cancer in a particular area or population, advance research and education concerning cancer and improve treatment of the disease.
  2. The Division shall provide any qualified researcher whom the Division determines is conducting valid scientific research with data from the reported information upon the researcher’s:

(a) Compliance with appropriate conditions as established under the regulations of the State Board of Health; and b) Payment of a fee to cover the cost of providing the data.(Added to NRS by 1983, 1677; A 2003, 1248; 2015. 387)\

NRS 457.270 Consent required before disclosure of identity of patient, physician or health care facility. The Division shall not reveal the identity of any patient, physician or health care facility which is involved in the reporting required by NRS 457.250 unless the patient, physician or health care facility gives prior written consent to such a disclosure. Added to NRS by 1983, 1678; A 1993, 174)

AC 457.140 Disclosure of information: Scientific research into cancer. (NRS 457.065, 457.240)

  1. A person who desires to use the confidential records of individual patients or the statistical data of the registry for the purpose of scientific research into cancer must apply in writing to the Chief Medical Officer. The applicant must:(a)Set forth in the application:
    (1) His or her qualifications as an epidemiologist, physician or employee of a bona fide program of research into cancer or other qualification for using confidential information and statistical data in the registry; and
    (2) A description of the research project in which that information will be used.
    (b) Sign a statement, on a form furnished by the Chief Medical Officer or a designee hereof, in which the applicant agrees not to make any copies of the records, and to maintain the confidentiality of the information in the records in the manner required by NAC 457.010 to 457.150, inclusive.
    (c) Agree to submit to the Chief Medical Officer or the designee for review and approval any proposed publication which is based on or contains information obtained from the registry.
  1. The Chief Medical Officer or the designee must:
    (a) Before a researcher is allowed access to information in the registry, make a written finding that he or she is qualified as a researcher and has a need for the information; and
    (b) Before any material based on or containing information from the registry is published by the researcher, examine, and give written approval for the proposed publication.
    Added to NAC by Bd. of Health, eff. 12-3-84; A 1-24-92; R075-98, 11-18-98)

Any information supplied by the Bermuda National Tumour Registry is available to be used in any of the aforementioned purposes with the express directive that patient identifying data be redacted and kept confidential. If patient identifying information is sought, written consent must be granted by the Bermuda National Tumour Registry through guidance provided by the Bermuda Board Ethics Committee.

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