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CDC Cancer Registry Data Access for Research ProjectCancer Registry Research Approval Process:Classification of States by Level of Approval RequiredUpdated February 2018National Center for Chronic Disease Prevention and Health PromotionDivision of Cancer Prevention and Control
Definition of TermsApproval process: The approval process for research requests for access to confidential data is specific to eachstate cancer registry. The approval process may require cancer registry, institutional review board (IRB) and/orregulatory group approvals.Levels of approval: The levels of review for approval range from one to four or more levels of review that mayinclude the cancer registry, affiliated IRB, and affiliated regulatory groups.Sponsorship: Clarifies if sponsorship from a local epidemiologist or state-based researcher is required for anyresearch request to access confidential data.Committee: This term represents any regulatory body or group, board, or review group different from the IRB, fromwhom approval is required.Epidemiologist: This term represents a cancer registry-affiliated epidemiologist.Cancer registry IRB: This term represents an institutional review board affiliated with the cancer registry.Level of complexity scale: The level of complexity for gaining approval to access confidential data is based onfactors including the number of levels of approval, time frame for approval, pediatric special requirements, fees,sponsorship requirement, a limit on the number of studies allowed by the cancer registry or the IRB, and whetherphysician/patient authorization is required.CDC Cancer Registry Data Access for Research Page 2
States That Require One Level of ationby cancerregistryStateOne level of eNoNoVariesNoNoNoColoradoCancer registry IRBNoNo2–6NoYesYesConnecticutCancer registry IRBNoNo 2NoYesYesDistrict ofColumbiaCancer registry IRBNoNo 2NoNoYesGeorgiaCancer registry IRBNoYes2–3YesNoYesIdahoCommitteeYesYes 2NoNoYesIllinoisCancer registry IRBNoYesVariesNoYesYesIndianaCommitteeNoNo 2NoNoYesKentuckyCommitteeNoYes 2NoNoYesPatientMassachusettsMDPH IRBNoNo 2NoYesYesMississippiCommitteeNoYes 2NoNoNevadaCancer registry IRBNoYes2–6NoPennsylvaniaCommitteeNoYes thorizationby cancerregistryPhysician/patientauthorizationby researcherNot applicable Not applicable Not applicableLimit onnumber Level ofofcomplexitystudiesNoLessNot sician and Physician andNot applicablepatientpatientNoMorePhysician and Physician andNot applicablepatientpatientNoMoreNoMiddleNoLessNot applicable Not applicableNoLessPatientNot applicable Not applicableNoLessYesPatientNot applicable Not applicableNoLessNoYesVariesVariesNoMoreNoNoYesNot applicable Not applicablePatientNoLessNoNoYesNot applicable Not applicablePatientNoMiddlePhysicianPhysicianNot applicable Not applicableVariesPatientVariesNot applicable Not applicableNot applicable Not applicableCDC Cancer Registry Data Access for Research Page 3VariesPhysician
States That Require Two Levels of Approval (up to two levels of approval depending on the cianPhysician/Physician/Limit onnotification/patientpatientnumber Level ofpatientauthorization byauthorization byofcomplexityauthorization bycancer registryresearcherstudiescancer registryStateTwo levels ofapprovalPediatricspecialrequirementsAlabama Advisory council Cancer registryIRBYesYesVariesNoNoYesArizona Committee Cancer registryIRBNoNoVariesNoNoYesFlorida Committee Cancer registryIRBNoYes 2NoYesYesHawaii Committee Cancer registryIRBNoYes 2YesYesYesPatientLouisiana Committee Cancer registryIRBNoYes 2NoYesYesNoMaine Cancer registrydirector Cancer registryIRBNoYes2–6NoYesYesNot applicable Not applicableMinnesotaMontana Peer reviewcommittee (afterregistry staffreview to ensurecompliance withlegalrequirements) Commissioner Cancer registrycommittee Legal counselFeeTimeframe(months)Yes, insofarasinvolvementof childrenelevatesscrutiny; nospecificrequirementNo app.fee; costrecoveryfor workifapproved2–6YesNo, butapproval byresearcher’sIRB isrequiredNoNo 2NoNoPhysicianNot applicableYesMiddleNot applicable Not applicablePhysicianNoMiddleNot applicable Not MoreYesPhysician andpatient (instateresearchersNot applicable Not applicablecan contactpatients afterphysicianpermission)NoMoreYesNot applicable Not applicableNoLessCDC Cancer Registry Data Access for Research Page 4PhysicianNot applicable Not applicableYesPatient
StateTwo levels ianPhysician/Physician/Limit onnotification/patientpatientnumber Level ofpatientauthorization byauthorization byofcomplexityauthorization bycancer registryresearcherstudiescancer registryNewHampshire Committee Cancer registryIRBYesNo 2NoNoYesNew Jersey Committee Cancer registryIRBNoYesVariesNoYesYesPatient Cancer registrydirectorNew Mexico Cancer registryIRBNoYesVariesYesYesYesPhysician andpatientPhysician andpatient Committee Cancer registryIRBNoYes2–6NoNoYesNot applicable Committee CommitteeNoNo2–6NoNoYesVaries Cancer registry OhioDepartment ofHealth IRBNoNo2–6NoNoYesYesNo2–6NoNoYesTennessee Cancer registrydirector Cancer registryIRBNoNo 4NoYesYesPatientUtah Investigator’sinstitution’s IRB ReviewcommitteeNoYesVariesNoYesYesPatientNew YorkNorth DakotaOhio Cancer registrydirectorRhode Island Healthdepartment IRBNot applicable Not applicableNoMoreNoMiddleNot applicableNoMorePhysician andpatientNot applicableNoMiddleVariesVariesNoMiddleNot applicable Not applicablePhysicianNoMiddleNot applicable Not applicablePatientNoMoreNot applicable Not applicableYesMoreNot applicable Not applicableNoMoreCDC Cancer Registry Data Access for Research Page 5PhysicianNot applicable Not applicable
cian/Physician/Limit onnotification/patientpatientnumber Level ofpatientauthorization byauthorization byofcomplexityauthorization bycancer registryresearcherstudiescancer registryStateTwo levels ofapprovalPediatricspecialrequirementsVirginia Healthdepartment IRB CommissionerNoVariesVariesNoYesVariesNoWashington Cancer registryIRB AssistantsecretaryNoNoVariesNoNoYesPatientWest Virginia Cancer registrydirector CommitteeNoYes2–6NoNoYesVariesVariesWyoming Committee Cancer registryIRBYesNo 2NoNoYesVariesVariesFeeTimeframe(months)CDC Cancer Registry Data Access for Research Page t applicable Not applicable
States That Require Three Levels of Approval (up to three levels of approval depending on the research)PatientcontactstudiesallowedNoNoYesNot applicable Not applicable 2NoYesYesNot entNebraska Cancer registrydirector Committee AdministratorNoYes 2NoNoYesPatientNorthCarolina Cancer registrydirector SCHS director Committee chairNoYes 2NoNoYesPhysicianFeeDelaware Epidemiologist Committee Cancer registryIRBNoNo2–6Iowa Epidemiologist Cancer registryIRB CommitteeYesYesMichigan Cancer registryIRB Scientificcommittee Dept. of healthdirectorYesMissouri Cancer registrysenior statisticianand staff Cancer registrydirector Dept. of healthIRBStateThree levels ician/patientauthorizationby zationby thorizationby researcherNoMiddlePhysician andNot applicablepatientNoLessPhysician andNot applicable Not applicablepatientNoMoreNot applicable Not applicableYesMoreNot applicable Not applicableNoLessNoLessCDC Cancer Registry Data Access for Research Page 7PhysicianPatientLimit onnumber Level ofofcomplexitystudiesPatient
PatientcontactstudiesallowedNoYesYesPhysician andNot applicable Not applicablepatientNoMiddle2–6YesNoYesPhysician andpatientNot applicableNoMoreNo2–6NoYesYesNot applicable Not ian and Physician andNot applicablepatientpatientNoMiddleNoYes 2NoNoYesNot applicable Not applicableNoLessFee Cancer registry Cancer registryIRB CommissionerNoYes2–6 Cancer registrymanager Cancer registryadvisorycommittee Public health IRBYesYes Cancer registrydirector andcoordinatorPuerto Rico Cancer registryIRB CommitteeYes Cancer registry Committee Department ofHealth IRB Cancer registrydirector Cancer registrySouth Dakotacommittee Three levels ician/patientauthorizationby zationby redPediatricspecialrequirementsCDC Cancer Registry Data Access for Research Page 8Physician andpatientPhysician/patientauthorizationby researcherPhysicianLimit onnumber Level ofofcomplexitystudies
StateThree levels ofapprovalSpecific Territory: Cancer registrydirector CommitteeUnited States Official/local IRBPacific IslandsRegional: Cancer registrydirector CommitteeVermont Cancer registrydirector Committee Cancer 6NoYes2–6PatientcontactstudiesallowedNoNoYesNot applicable Not applicableNoYesYesPhysician ician/patientauthorizationby zationby redCDC Cancer Registry Data Access for Research Page 9Physician andpatientPhysician/patientauthorizationby researcherLimit onnumber Level ofofcomplexitystudiesPhysicianNoMiddleNot applicableNoMiddle
States That Require Four Levels of Approval (up to four levels of approval depending on the zationby YesYesPediatricspecialrequirementsFeeArkansas Epidemiologist Committee State board ofhealth AdministrationNoYes2–6California Committee Epidemiologist Cancer registryIRB Cancer registrydirectorYesYes Cancer registrydirector Cancer registrydata releaseboard University and/orstate IRB Secretary of KDHENoMaryland Cancer registrydirector Cancer registryofficials Cancer registryIRB SecretaryTexas Cancer registrymanager Cancer registryIRB Committee CommissionerStateKansasFour levels of iannotification/patientauthorizationby cancerregistryNot applicable Not applicableLimit onnumber Level ofofcomplexitystudiesNoMiddleNoMoreNot applicable Not applicableNoMiddleNot applicable Not applicableNoMiddleNoMoreNot applicable Not applicableNot applicable Not applicableCDC Cancer Registry Data Access for Research Page 10Physician/patientauthorizationby researcherPatientPatient
Level of Complexity by State Cancer RegistryLess Complex Process ssippiMontanaNebraskaNorth CarolinaPennsylvaniaSouth DakotaMiddle Complex Process ArizonaArkansasConnecticutDelawareDistrict of ColumbiaKansasMarylandNew JerseyNew YorkNorth DakotaOhioOklahomaSouth CarolinaUnited States PacificIslandsVermontWashingtonWisconsinMore Complex Process sLouisianaMaineMichiganMinnesotaMissouriNevadaNew HampshireNew MexicoOregonPuerto RicoRhode IslandTennesseeTexasUtahVirginiaWest VirginiaWyomingCDC Cancer Registry Data Access for Research Page 11
Appendix: Classification and Analysis TablesCancer registries’ human subject protection policies and procedures classification category definitionsClassification CategoryDefinition1. Requires initial cancer registrycontact prior to applicationsubmissionHow to initiate the data request process: clarifies if the researcher shouldcontact the cancer registry representative or the IRB as a first step in theprocess.2. State cancer registry allowsrelease of state residents’identifiable data to researchersState cancer registry allows identifiable and confidential data to be released toresearchers as long as the researcher meets all required state cancer registryspecific confidentiality requirements and obtains the necessary approvals.3. Requires sponsorship from localresearcherClarifies if sponsorship from a local epidemiologist or state-based researcher isrequired.4. Requires cancer registry-specifichuman subject protection trainingThis section clarifies if the IRB of record or the cancer registry has specifichuman subject protection training requirements.5. Requires IRB approval fromrequested state and/orresearcher’s affiliated institutionClarifies and identifies the number of IRBs that need to review and approve theresearch project.6. Special requirements for pediatricresearchClarifies if the state has special requirements for pediatric research.7. Patient contact, authorization, andconsent required for release ofconfidential dataState-specific requirements for contacting patients and obtaining consent forresearch purposes.8. Detail and number of steps in theapproval processIdentifies the number of regulatory bodies and process of review and approvalrequired for research studies. Categories include one to four or more levels.9. Frequency of IRB and otherregulatory committee meetingsCategories include weekly, monthly, quarterly, bi-monthly, semi-monthly, other,and unknown.10. Charges a feeProvides information regarding the cost of a data request.11. Time frame for the approvalprocessThe length of time generally required for data request processes and researchapprovals.12. Limit on number of studiesThe number of active projects a researcher may have open with the cancerregistry.13. Involvement of cancer registrydirector or senior official inapproval processClarifies if cancer registry administrators and senior officers are involved in theresearch review and approval process. In general, involvement of cancerregistry officials is considered a positive feature.CDC Cancer Registry Data Access for Research Page 12
1. Requires initial cancer registry contact prior to application submissionNo Initial Contact Required(7)Arizona, California,Connecticut, Massachusetts,Nevada, North Carolina,VirginiaInitial Contact Required (48)Alabama, Alaska, Arkansas, Colorado, Delaware, District of Columbia, Florida,Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine,Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, NewHampshire, New Jersey, New Mexico, New York, North Dakota, Ohio, Oklahoma,Oregon, Pennsylvania, Puerto Rico, Rhode Island, South Carolina, South Dakota,Tennessee, Texas, U.S. Pacific Islands, Utah, Vermont, Washington, West Virginia,Wisconsin, Wyoming2. State cancer registry allows release of state residents’ identifiable data to researchersDoes Not Allow Release (0)NoneAllows Release (53)Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware,District of Columbia, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas,Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota,Mississippi, Missouri, Montana, North Carolina, Nebraska, Nevada, New Hampshire,New Jersey, New Mexico, New York, North Dakota, Ohio, Oklahoma, Oregon,Pennsylvania, Puerto Rico, Rhode Island, South Carolina, South Dakota,Tennessee, Texas, U.S. Pacific Islands, Utah, Vermont, Virginia, Washington, WestVirginia, Wisconsin*, Wyoming*Wisconsin allows access to identifiable data under very strict circumstances.3. Requires sponsorship from local researcherNo Sponsorship Required (46)Alabama, Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware,District of Columbia, Florida, Idaho, Illinois, Indiana, Iowa, Kentucky, Louisiana,Maine, Maryland, Massachusetts, Michigan, Mississippi, Montana, Nebraska,Nevada, New Hampshire, New Jersey, New York, North Carolina, North Dakota,Ohio, Oklahoma, Pennsylvania, Puerto Rico, Rhode Island, South Carolina, SouthDakota, Tennessee, Texas, U.S. Pacific Islands, Utah, Vermont, Virginia,Washington, Wisconsin, West Virginia, WyomingSponsorship Required (7)Georgia, Hawaii, Kansas,Minnesota, Missouri, NewMexico, Oregon4. Requires human subject protection trainingHuman Subject ProtectionTraining Required (20)No Human Subject Protection Training Required (33)Alabama, Alaska, Arizona, Arkansas, California, Delaware, District of Columbia,Georgia, Idaho, Illinois, Indiana, Kentucky, Maine, Maryland, Minnesota, Mississippi,Montana, Nebraska, Nevada, New Hampshire, New York, North Carolina, NorthDakota, Ohio, Oregon, Pennsylvania, Rhode Island, South Dakota, U.S. PacificIslands, Washington, West Virginia, Wisconsin, WyomingColorado, Connecticut, Florida,Hawaii, Iowa, Kansas,Louisiana, Massachusetts,Michigan, Missouri, NewJersey, New Mexico,Oklahoma, Puerto Rico, SouthCarolina, Tennessee, Texas,Utah, Vermont, VirginiaCDC Cancer Registry Data Access for Research Page 13
5. Requires IRB approval from requested state and/or researcher’s affiliated institutionIRB Approval RequirementTotalStatesIRB approvals from bothresearcher’s and registryaffiliated institution28Alabama, California, Connecticut, Delaware, District of Columbia,Illinois, Iowa, Kansas, Louisiana, Maine, Maryland, Massachusetts,Michigan, Missouri, New Hampshire, New Jersey, New Mexico,New York, Ohio, Oklahoma, Oregon, Puerto Rico, South Carolina,Tennessee, U.S. Pacific Islands, Vermont, Virginia, WashingtonOnly IRB approval fromresearcher-affiliated institution17Alaska, Arkansas, Idaho, Indiana, Kentucky, Minnesota, Mississippi,Montana, Nebraska, Nevada, North Carolina, North Dakota,Pennsylvania, South Dakota, Utah, West Virginia, WisconsinOnly IRB approval fromregistry-affiliated institution6Arizona, Florida, Georgia, Rhode Island, Texas, WyomingIRB approval from registryaffiliated institution butinformation not available if IRBapproval required fromresearcher-affiliated institution2Colorado, Hawaii6. Special requirements for pediatric researchSpecial Requirements forPediatric Research (11)Alabama, California, Idaho,Iowa, Michigan, Minnesota,New Hampshire, Oregon,Puerto Rico, Rhode Island,WyomingNo Special Requirements for Pediatric Research (42)Alaska, Arizona, Arkansas, Colorado, Connecticut, Delaware, District of Columbia,Florida, Georgia, Hawaii, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine,Maryland, Massachusetts, Mississippi, Missouri, Montana, Nebraska, Nevada, NewJersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma,Pennsylvania, South Carolina, South Dakota, Tennessee, Texas, U.S. PacificIslands, Utah, Vermont, Virginia, Washington, West Virginia, WisconsinNotes: Alabama, Iowa, Rhode Island, and Utah require parental and/or physician consent.Alaska, New Hampshire, Puerto Rico, and Utah have never handled pediatric study requests.California, Michigan, Minnesota, Oregon, Utah, and Wyoming have a more difficult approval process or require moreoversight.Idaho requires a case-by-case review.North Carolina prefers initial cancer registry contact prior to application submission to discuss data release charges tobe included in the application.Utah specifically does not have any special requirements for research involving children, but the IRB would havespecial requirements.Virginia does not allow patient contact either directly or indirectly, through providers.CDC Cancer Registry Data Access for Research Page 14
7. Patient contact, authorization, and consent required for release of confidential data7a. Cancer registry requests authorization from physician and/or patientState-Specific Requirementfor Requesting AuthorizationTotalStatesPatient authorization required14Arkansas, Hawaii, Illinois, Kansas, Kentucky, Maryland,Massachusetts, Mississippi, Missouri, Nebraska, New Jersey,Tennessee, Utah, WashingtonBoth physician notification andpatient authorization required(passive physician consent)9Georgia, Idaho, Iowa, Louisiana, New Mexico, New York, Oregon,South Carolina, VermontBoth physician and patientauthorization required (activephysician consent)4Indiana, Michigan, Minnesota, OklahomaPhysician notification required(passive consent)3Alabama, Colorado, North CarolinaPhysician authorizationrequired (active consent)1Alabama (pediatric)Notes: In Alabama, active physician consent is required for pediatric studies.The Louisiana Tumor Registry (LTR) sends the notification letter to the physician first to check whether there are anymedical reasons that we should not contact the patient. If the physician does not respond within two weeks, the LTRcan contact patients.In North Carolina, the registry must obtain passive physician consent when the research study is within one year ofparticipant diagnosis.In Washington, authorization may be waived by the IRB.Virginia does not allow patient contact either directly or indirectly, through providers.7b. Researcher requests authorization from physician and/or patientState-Specific Requirementfor Requesting AuthorizationTotalStatesPhysician authorizationrequired (active consent)8Connecticut, Indiana, Maine, New Hampshire, Ohio, Puerto Rico,South Dakota, U.S. Pacific IslandsPhysician authorizationrequired (passive consent)2Arizona, LouisianaPatient authorization required8California, Delaware, Florida, Montana, North Carolina,Pennsylvania, Rhode Island, TexasNotes: Louisiana needs to inform physician first (provide physician with the researcher’s name, institution and contactinformation). Then, LTR notifies the patient with his/her permission before giving his/her information to researcher.Virginia does not allow patient contact either directly or indirectly, through providers.CDC Cancer Registry Data Access for Research Page 15
7c. Who consents patient for participation in the study?State-SpecificRequirement forConsenting PatientsTotalStatesResearcher contactsand consents40Alabama, Arizona, California, Colorado, Connecticut, Delaware, Florida,Georgia, Idaho, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Maryland,Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana,Nebraska, New Hampshire, New Mexico, New York, North Carolina, Ohio,Oklahoma, Oregon, Pennsylvania, Puerto Rico, Rhode Island, South Carolina,South Dakota, Tennessee, Texas, U.S. Pacific Islands, Vermont, WisconsinOptions on consent7District of Columbia, Iowa, North Dakota, New Jersey, Utah, Washington,WyomingCancer registrycontacts and consents2Arkansas, HawaiiStrict conditions forpatient contact studies2Nevada, West VirginiaNo patient contact2Alaska, VirginiaNotes: Delaware, Montana, Nevada, and West Virginia require the researcher to have prior informed consent fromthe patient.Texas requires the researcher to send a courtesy note to the physician.Virginia does not allow patient contact directly or indirectly, through providers.8. Detail and number of steps in the approval process8a. One level of approvalState (14)One Level of ApprovalAlaskaAlaska Cancer Registry Internal Review CommitteeColoradoColorado Department of Public Health and Environment IRBConnecticutConnecticut Department of Public Health Human Investigations Committee IRBDistrict of ColumbiaDistrict of Columbia IRB for the Public HealthGeorgiaGeorgia Department of Public Health IRBIdahoIdaho Cancer Analysis Work GroupIllinoisIllinois Department of Public Health IRBIndianaIndiana State Cancer Registry Data Release CommitteeKentuckyKentucky Cancer Registry Scientific Advisory CommitteeMassachusettsMassachusetts Department of Public Health IRB and Data Access CommitteeMississippiMississippi Cancer Registry Review CommitteeNevadaNevada Central Cancer Registry IRBPennsylvaniaBureau of Health Statistics and ResearchWisconsinDepartment of Health Services Data Governance BoardCDC Cancer Registry Data Access for Research Page 16
8b. Two levels of approval (up to two levels of approval depending on the research)State (21)Two Levels of ApprovalAlabama Alabama Statewide Cancer Registry Advisory Council Alabama Department of Public Health IRBArizona Arizona Cancer Registry Committee Arizona Department of Health Services Human Subjects Review Board IRB Florida Cancer Registry Program (programmatic acknowledgement must be received prior toFloridaapplying to the Florida DOH IRB) Florida Department of Health IRBHawaii University of Hawaii Committee on Human Studies IRB Commission on Cancer of the Hawaii Medical Association IRBLouisiana Louisiana State University Health Sciences Center IRB Institutional Bio-Safety CommitteeMaine Maine Cancer Registry Director Maine Center for Disease Control and Prevention, Department of Health and Human ServicesIRBMinnesota Minnesota Cancer Surveillance System Administrative Review Group Peer Review CommitteeMontana Montana Central Tumor Registry Data Use Review Committee Legal Counsel of the Department of Public Health and Human ServicesNewHampshire Health Statistics and Data Management Data Review Committee New Hampshire Department of Health and Human Services IRBNew Jersey Scientific Review Board of the Cancer Institute of New Jersey University of Medicine and Dentistry of New Jersey IRBNew Mexico New Mexico Cancer Registry Principal Investigator Human Research Review CommitteeNew York New York State Department of Health Administrative Approval New York State Department of Health IRBNorth Dakota North Dakota Department of Health HIPAA Privacy Office North Dakota Department of Health Privacy BoardOhio Ohio Cancer Incidence Surveillance System Data Group Ohio Department of Health IRBRhode Island Rhode Island Cancer Registry Program Director Rhode Island Department of Health IRBTennessee Tennessee Department of Health IRB Tennessee Cancer Registry DirectorUtah University of Utah IRB Utah Cancer Registry Advisory Research CommitteeVirginia Virginia Department of Health IRB Virginia Department of Health Commissioner of Public HealthWashington Washington State IRB Washington State Department of Health Assistant SecretaryWest Virginia West Virginia Cancer Registry Director and West Virginia State Epidemiologist Cancer Advisory CommitteeCDC Cancer Registry Data Access for Research Page 17
State (21)WyomingTwo Levels of Approval State Epidemiologist Wyoming Department of Health IRB8c. Three levels of approval (up to three levels of approval depending on the research)State (13)Three Levels of ApprovalDelaware Chronic Disease Epidemiologist Delaware Division of Public Health Privacy Board Delaware Human Subjects Review BoardIowa Iowa Cancer Registry Epidemiologist University of Iowa IRB Iowa Department of Public HealthMichigan Michigan Department of Community Health IRB Scientific Advisory Panel Director of Department of Community HealthMissouri Missouri Cancer Registry and Research Center Review Committee Vital Records Registrar Missouri Department of Health and Senior Services IRBNebraska Nebraska Cancer Registry Program Director Department of Health and Human Services Public Health Support Unit Administrator Department of Health and Human Services Legal DepartmentNorth Carolina North Carolina Department of Health, Cancer Registry Director North Carolina Department of Health, State Center for Health Statistics Director North Carolina Department of Health, State Cancer Advisory BoardOklahoma Oklahoma Central Cancer Registry Oklahoma State Department of Health IRB Commissioner of HealthOregon Oregon Department of Human Services, Public Health IRB Oregon State Cancer Registry Program Director Oregon State Cancer Registry Advisory CommitteePuerto Rico Puerto Rico Cancer Registry Program Director and Coordinator of Analysis and Research Unit University of Puerto Rico Medical Sciences Campus IRB Puerto Rico Cancer Registry Advisory Committee Cancer registrySouth Carolina Committee Department of Health IRBSouth Dakota South Dakota Cancer Registry Program Director A Committee of the South Dakota Cancer Registry Executive Management (Secretary of Health and three division directors)U.S. PacificIslandsIf specific territory, up to three senior-level officials: Pacific Regional Central Cancer Registry Program Director Senior-level ranking official Local IRBIf regional level, two senior-level officials: Pacific Regional Central Cancer Registry Program Director Pacific Islands Health Officers AssociationVermont Vermont Cancer Registry Program Chief Vermont Department of Health Legal Department Vermont Agency of Human Services IRBCDC Cancer Registry Data Access for Research Page 18
8d. Four or more levels of approval (up to four levels of approval depending on the research)State (5)Four Levels of ApprovalArkansas Chief EpidemiologistScientific Advisory CommitteeState Board of HealthAdministration (MOA required)California Committee for the Protection of Human Subjects IRBCalifornia Cancer Reporting and Epidemiologic Studies Research Program DirectorCancer registry IRBCalifornia Department of Public Health Cancer Registry DirectorKansas Kansas Cancer Registry Director Kansas Cancer Registry Data Release Board University of Kansas Medical Center (KUMC) IRB and/or Kansas Department of Health andEnvironment (KDHE) IRB Secretary, KDHE ProtectionMaryland Maryland Cancer Registry Program DirectorThree senior-level Department of Health and
Oregon Cancer registry manager Cancer registry advisory committee Public health IRB Yes Yes 2-6 Yes No Yes Physician and patient Physician and patient Not applicable No More Puerto Rico Cancer registry director and coordinator Cancer registry IRB .
