Data Contract Condition Language for:
California Cancer Registry

sorted by Category and Condition

October 21, 2014, 11:11 pm

Data Use

No redistribution of data

6. The Principal Investigator and members of his/her research team with a need to
know may have access to the CCR data. The Recipient Institution may grant access to the CCR data to other persons to carry out a specific assignment on behalf of the Recipient Institution, which is directly related to the use for which disclosure was granted. Persons seeking access must provide information sufficient to justify the request. The individual must sign an agreement to maintain the confidentiality of the data. Recipient Institution may use the CCR's Agreement for Access to CCR Data form (available at www.ccrcal.org) or a comparable agreement for this purpose. Recipient Institution must maintain a list with the following information: name of the person authorizing access, name, title, address, and organizational affiliation of the persons granted access, dates of access (which may cover a prospective period not to exceed one year), and the specific purpose for which the CCR data will be used. A copy of the list must be provided annually to the CCR Data Custodian. Except as provided in this paragraph, Recipient Institution agrees not to grant access to the CCR data to any person, nor shall it permit persons to whom it has granted access to authorize others to have access to the CCR data.

Only minimum necessary data

4. Recipient Institution certifies that the CCR data they have requested is necessary for the above-referenced proposed use. If Recipient Institution receives CCR data that are not necessary for the above-referenced proposed use, they will immediately notify CCR and destroy the unneeded CCR data.

Stick to original research plan

5. Recipient Institution agrees to use the requested CCR data in strict conformity with the proposed use set forth above. Recipient Institution agrees not to use the CCR data for any other purpose, or for any purpose other than determining the sources of cancer and evaluating measures designed to eliminate, alleviate, or ameliorate their effect, and they agree not to permit the CCR data to be used for any other purpose. Recipient Institution agrees to notify the CCR Data Custodian and the Chief, Cancer Surveillance and Research Branch, California Department of Public Health if he or she becomes aware of errors or omissions in the CCR data, or of patient vital statistics or address information that is more current than the CCR data provided to them under this agreement.

Inspections & Penalties

Penalty

18. Recipient Institution acknowledges that if it fails to comply with any of their
obligations under this confidentiality agreement, the CCR Data Custodian and the State of California may suffer immediate, irreparable harm for which monetary damages may not be adequate. Recipient Institution agrees that, in addition to any Version 05.1 other remedies provided at law or in equity, the CCR Data Custodian and/or the State of California shall be entitled to seek injunctive relief to enforce the provisions of this agreement.

Publication

Cite/acknowledge data

9. Recipient Institution and Principal Investigator may include aggregate data,
conclusions drawn from studying CCR data, and case counts derived from CCR
data such as incidence and mortality counts (provided that such case counts do not in any way identify individual cases or sources of information) in professional
journals, public reports, presentations, press releases and other publications. A
copy shall be provided to the CCR Data Custodian and all publications shall contain
the acknowledgement and disclaimer set forth in section VI.4. of the CCR Data
Access and Disclosure Policies, and a copy shall be provided to the CCR Data
Custodian and the Chief, Cancer Surveillance and Research Branch, California Department of Public Health.

Disclaimer language

9. Recipient Institution and Principal Investigator may include aggregate data,
conclusions drawn from studying CCR data, and case counts derived from CCR
data such as incidence and mortality counts (provided that such case counts do not in any way identify individual cases or sources of information) in professional
journals, public reports, presentations, press releases and other publications. A
copy shall be provided to the CCR Data Custodian and all publications shall contain
the acknowledgement and disclaimer set forth in section VI.4. of the CCR Data
Access and Disclosure Policies, and a copy shall be provided to the CCR Data
Custodian and the Chief, Cancer Surveillance and Research Branch, California Department of Public Health.

No case listings in publications

9. Recipient Institution and Principal Investigator may include aggregate data,
conclusions drawn from studying CCR data, and case counts derived from CCR
data such as incidence and mortality counts (provided that such case counts do not in any way identify individual cases or sources of information) in professional
journals, public reports, presentations, press releases and other publications. A
copy shall be provided to the CCR Data Custodian and all publications shall contain
the acknowledgement and disclaimer set forth in section VI.4. of the CCR Data
Access and Disclosure Policies, and a copy shall be provided to the CCR Data
Custodian and the Chief, Cancer Surveillance and Research Branch, California Department of Public Health.

Security

Security plan incorporated by reference

3. Recipient Institution agrees to comply with the requirements of California Health and Safety Code section 103885, any and all other federal and state laws or regulations relating to confidentiality, security, use, access, and disclosure of CCR data, and the CCR Data Access and Disclosure Policies.

Legal Details

FOIA or other legal data request

10. Pursuant of the California Health and Safety Code section 103885, Recipient Institution and Principal Investigator 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. Recipient Institution and Principal Investigator shall immediately notify the CCR Data Custodian and the Chief, Cancer 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. Recipient Institution 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 file written objections to a discovery request and opposition to a motion to compel.

Extras Administration

Expiration: Date or Length in DUA

7. Except as expressly authorized by paragraph 9 of this Confidentiality Agreement, Recipient Institution agrees not to disclose any part of the CCR data, whether or not it explicitly or implicitly identifies individuals, to any person or institution, not to copy or reproduce the CCR data in whole or in part (except as an institutional program of backup for disaster recovery or as a necessary condition of the research project), in any format or medium, and not to permit others to disclose or reproduce the CCR data. If Recipient Institution has a legitimate justification for sharing CCR data with
another institution, e.g. as part of a collaborative research project, the Recipient Institution must obtain approval for this re-disclosure of the CCR data from the Chief, Cancer Surveillance and Research Branch, California Department of Public Health.

IRB required

11. If the proposed use is for research, Recipient Institution certifies that it has obtained approval for the proposed use from the Recipient Institution's committee for the protection of human subjects established in accordance with part 46 (commencing with section 46.101) of title 45 of the Code of Federal Regulations, and that they will carry out the proposed use in accordance with such approval, except that the terms Version 05.1 and conditions of this confidentiality agreement shall take precedence. Principal Investigator agrees to provide documentation of initial IRB approval and any renewals. If the proposed research involves patient contact based on information received from CCR, the Recipient Institution agrees to follow the special requirements required by CCR for patient contact studies including approval for the proposed use from the California Committee for Protection of Human Subjects (Section V. 6. c. Policies and Procedures).

Return/destroy media

8. Recipient Institution agrees to destroy all files, documents or other records
containing CCR data in their custody at the earliest opportunity consistent with the
conduct of the proposed use unless there is a health or research justification for
retention or retention required by law. Notwithstanding the foregoing, Recipient
Institution and Principal Investigator agree to destroy all files, documents or other
records containing CCR data in their custody no later than three years after the date of receipt unless the CCR Data Custodian, in its sole discretion, extends the deadline for destruction by written notice to Recipient Institution and Principal
Investigator. Destruction means physical destruction of files, documents or other
records, and de-identification shall not be considered destruction. Immediately
following the destruction of CCR data, Recipient Institution agree to provide the CCR Data Custodian with a written declaration, executed by an authorized representative of Recipient Institution, stating that the CCR data have been destroyed.