There are restrictions on capabilities for accessing the CCWEB support portal. From a network perspective, CCWEB is only available internally from UPMC's corporate network or through a browser in the MyApps Citrix environment. It is accessible if using the UPMC Always On VPN (AOVPN). From a user perspective, only users with UPMC domain '1UPMC-ACCT' accounts have access.
If you are not a UPMC or non-UPMC customer who is not set up in these parameters, you will need to identify a UPMC collaborator to submit the request on your behalf.
Certain types of biological specimen collection procedures will require separate IRB approval.
The UPMC Network Cancer Registry is outlined as a data source for clinical data associated with biological materials collected and stored in the Pitt Biospecimen Core (PBC). The PBC is a part of the Collaborative Honest Broker System HB015. If you are using the Pitt Biospecimen Core (PBC), formerly known as the Health Sciences Tissue Bank, please refer to the PBC Website for more information on how to proceed. For questions about the PBC, visit Contact Us | Pitt Biospecimen Core | University of Pittsburgh.
If you would like to use data from the UPMC Network Cancer Registry in conjunction with another biorepository, please contact Sharon Winters at winterssb@upmc.edu to discuss.
If you do not expect to retain identifiers, you may submit an IRB-exempt application using our honest broker system approach. Submit through the Pitt Protocol Review Online, or PittPRO, system. If you only need data from the UPMC Network Cancer Registry, you can submit the request under Medical Record Review using a Certified Honest Broker. Please review specifications outlined by the IRB for this category and if you have questions, submit them to askirb@pitt.edu Secondary Research with Data and/or Specimens | Human Research Protection Office (HRPO) | University of Pittsburgh
Be sure to include the following in your submission:
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- Reference to the Identity of the Honest Broker System or Process: UPMC Hillman Cancer Center (HCC), Pitt Biospecimen Core (PBC) and UPMC Enterprises (UPMCe)
- Reference to our UPMC/IRB Honest Broker Approval Number: HB015
- Reference to use of the UPMC Network Cancer Registry as a data source include the following statement* outlining our data source as well as the following:
* The UPMC Network Cancer Registry (Registry) is comprised of full time staff responsible for maintaining a standardized data system designed for the collection, management and analysis of demographic, diagnosis, staging, grading, treatment and progression data on patients having a diagnosis of cancer and other reportable conditions seen at UPMC hospitals and UPMC Hillman Cancer Center hospital-based clinics. The UPMC Network Cancer Registry and its Registry Information Services division ensures UPMC and UPMC Hillman Cancer Center is compliant with federal and state regulations and accreditation processes.
Established by Congress through the Cancer Registries Amendment Act in 1992, and administered by CDC, the National Program of Cancer Registries (NPCR) collects data on cancer occurrence (including the type, extent, and location of the cancer), the type of initial treatment, and outcomes. Together, CDC’s NPCR and the National Cancer Institute’s (NCI’s) Surveillance, Epidemiology, and End Results (SEER) Program collect data for the entire U.S. population. This national coverage enables researchers, clinicians, policy makers, public health professionals, and members of the public to monitor the burden of cancer, evaluate the successes of programs, and identify additional needs for cancer prevention and control efforts at national, state, and local levels.
The UPMC Network Cancer Registry contributes data to state-based central cancer registries and ultimately to the CDC NPCR and SEER, where required, under a laws and regulations governing public reporting of cancer permitted under the Health Insurance Portability and Accountability Act (HIPAA) and thus is exempt from patient consenting practices.
- UPMC Facilities of Interest
- Timeframe of data to include
- Diagnoses of interest to the study
- Data elements needed
- If you need dates, it is highly recommended you select LIMITED DATA SET on the application form and explain the reason you need dates to conduct your final analysis. Note, if you select DE-IDENTIFIED/ANONYMIZED on the form, the data will be completely anonymous, no dates, limiting the flexibility on final analysis.
- The name of the honest broker(s) assigned to your project with the words “or their designee” on the form. By adding “or their designee,” this will avoid the need to submit modifications to your application in the event there is a staffing change in the UPMC Network Cancer Registry.
- A completed and signed copy of the Honest Broker Assurance Form for each honest broker involved in your project
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Investigators with Patient Care Responsibilities at UPMC have two options:
- Expedited Application with Waiver of HIPAA Authorization: If you need to retain identifiers and/or are using multiple data sources, including the UPMC Network Cancer Registry, it is highly recommended you complete an Expedited application with request for a waiver of consent and waiver of HIPAA Authorization. This approach will facilitate approvals due to minimal risk based on your involvement in the clinical care of the patients you wish to study and provides a greater level of flexibility for preparing the data.
- You will have to submit your application through the Pitt Protocol Review Online, or PittPRO, system.
- Reference to use of the UPMC Network Cancer Registry as a data source
- Be sure to include the following with respect to the UPMC Network Cancer Registry:
- UPMC Facilities of Interest
- Timeframe of data to include
- Diagnoses of interest to the study
- Data elements needed
- IRB-Exempt Application under the category of Secondary Research with Data and/or Specimens: If you do not expect to retain identifiers, you may submit an IRB-exempt application using our honest broker system approach. Submit through the Pitt Protocol Review Online, or PittPRO, system. If you require data from multiple sources, may not be able to use the UPMC Network Cancer Registry with this approach. If you only need data from the UPMC Network Cancer Registry, you can submit the request under Medical Record Review using a Certified Honest Broker. Please review specifications outlined by the IRB for this category and if you have questions, submit them to askirb@pitt.edu. Secondary Research with Data and/or Specimens | Human Research Protection Office (HRPO) | University of Pittsburgh
Be sure to include the following in your submission:- Reference to the Identity of the Honest Broker System or Process: UPMC Hillman Cancer Center (HCC), Pitt Biospecimen Core (PBC) and UPMC Enterprises (UPMCe)
- Reference to our UPMC/IRB Honest Broker Approval Number: HB015
- Reference to use of the UPMC Network Cancer Registry as a data source and include the following statement* outlining our data source as well as the following:
* The UPMC Network Cancer Registry (Registry) is comprised of full time staff responsible for maintaining a standardized data system designed for the collection, management and analysis of demographic, diagnosis, staging, grading, treatment and progression data on patients having a diagnosis of cancer and other reportable conditions seen at UPMC hospitals and UPMC Hillman Cancer Center hospital-based clinics. The UPMC Network Cancer Registry and its Registry Information Services division ensures UPMC and UPMC Hillman Cancer Center is compliant with federal and state regulations and accreditation processes.
Established by Congress through the Cancer Registries Amendment Act in 1992, and administered by CDC, the National Program of Cancer Registries (NPCR) collects data on cancer occurrence (including the type, extent, and location of the cancer), the type of initial treatment, and outcomes. Together, CDC’s NPCR and the National Cancer Institute’s (NCI’s) Surveillance, Epidemiology, and End Results (SEER) Program collect data for the entire U.S. population. This national coverage enables researchers, clinicians, policy makers, public health professionals, and members of the public to monitor the burden of cancer, evaluate the successes of programs, and identify additional needs for cancer prevention and control efforts at national, state, and local levels.
The UPMC Network Cancer Registry contributes data to state-based central cancer registries and ultimately to the CDC NPCR and SEER, where required, under a laws and regulations governing public reporting of cancer permitted under the Health Insurance Portability and Accountability Act (HIPAA) and thus is exempt from patient consenting practices.
- UPMC Facilities of Interest
- Timeframe of data to include
- Diagnoses of interest to the study
- Data elements needed
- If you need dates, it is highly recommended you select LIMITED DATA SET on the application form and explain the reason you need dates to conduct your final analysis. Note, if you select DE-IDENTIFIED/ANONYMIZED on the form, the data will be completely anonymous, no dates, limiting the flexibility on final analysis.
- The name of the honest broker(s) assigned to your project with the words “or their designee” on the form. By adding “or their designee,” this will avoid the need to submit modifications to your application in the event there is a staffing change in the UPMC Network Cancer Registry.
- A completed and signed copy of the Honest Broker Assurance Form for each honest broker involved in your project
The data set collected by this cancer registry follows national and state requirements. Please refer to the Standardized Data Set section of our website for more information. There are strict rules for coding and quality control of each data element. Additional data elements are collected for disease-driven objectives. General categories of our data elements include:
- Demographics (gender, race, age at diagnosis, zip/county of residence)
- Diagnosis (primary site, morphology, grade, laterality, date of initial diagnosis, date of first positive biopsy, diagnostic method)
- Extent of Disease (clinical AJCC stage, pathologic AJCC stage, AJCC prognostic stage group, tumor size, regional lymph node involvement, distant metastasis at diagnosis, disease-specific prognostic factors)
- First Course of Treatment (start dates and types of treatment modalities including: cancer directed surgery, surgery to regional/distant sites, chemotherapy, radiation therapy, immunotherapy, hormone therapy, palliative treatment, other treatments)
- Outcomes (date of last contact/death, vital status, cancer status, date of first recurrence, type of first recurrence, subsequent treatment)
Please allow for at least two (2) weeks for general requests to be processed. If the request is more complicated (requiring data from multiple sources, requires additional data to be collected that is not part of a standard data set, involves large volume of biological specimens, rigorous process of materials), interested individuals should be aware the request may take longer than two weeks. Members of this system will communicate progress with the requestor.
If you have any general questions, you may email Sharon Winters, MS, CTR, Director of the UPMC Network Cancer Registry at winterssb@upmc.edu however ultimately you must submit your request for formal approval.
In accordance with the UPMC Hillman Cancer Center Oncology Data Governance policy, to request data from the UPMC Network Cancer Registry, customers must submit a Report / Data Request through the UPMC Hillman Cancer Center CCWEB support portal as follows:
PDF version of instructions also available*
- Using a UPMC log in: https://ccweb.upmc.edu/
- Select “Submit a Ticket” on the right side of the screen
- Confirm your Contact Information
- Enter your Work Phone number
- Enter information into “I’m filling this out for:”
- Select Your Location from the drop-down list (one that matches most appropriately)
- Select Issue = Reports/Data then follow directions from here
- Enter Date Required: Per UPMC Hillman Cancer Center Oncology Data Governance policy, expect at least at 2 week turn around
- If this is an urgent request, select YES. Customer must then briefly and concisely explain the urgency
- Select Request Purpose: from the list provided which best fits your request
- Research related requests will require acknowledgement of IRB approval – you must upload your IRB application and approval letter under the documents (last step)
- Quality Improvement projects will require acknowledgement of approval by the UPMC Quality Review Committee – you must upload your QRC application and approval email under documents (last step)
- Select Request Type: from the list provided
- For Research/Honest Broker data needs, be sure to select that option for proper routing
- Select Data Source(s): from the list provided
- Be certain to select Cancer Registry for projects involving cancer registry data for proper routing
- Select Frequency: Requests using Cancer Registry data must s = One Time Run
- Complete the subsequent text areas to outline the following:
- Users/Consumers/Recipients/Audience
- Data Elements to be included (these should mirror and expand on what is outlined in IRB and QRC applications)
- Selection Criteria (these should mirror and expand on what is outlined in IRB and QRC applications)
- Any additional information to help clarify the request
- Upload Supporting Documents including but not limited to:
- IRB application and approval letter
- QRC application and approval email
- Preferred sample data format or any forms that are required to be completed for grant applications, etc.
Absolutely, quality review of cancer registry data is very important and is required to be conducted using a variety of methods in accordance with national and state guidelines and our internal Annual Quality Control Plan. The quality control process includes:
- Management and Peer Review: Random selection of at least 10% of annual reportable cases from each UPMC facility. Management and/or Registry Coordinators review 22-35 data elements per case, comparing the medical record data source to data entered into the cancer registry database. A 95% quality rate must be achieved which is the gold standard for the North American Association of Central Cancer Registries (NAACCR).
- Automated Case Validation: Our cancer registry software meets the requirements set forth by the American College of Surgeons Commission on Cancer, North American Association of Central Cancer Registries, Departments of Health for states we serve for embedding quality control parameters within the software. 100% of all abstracts entered into the cancer registry database are validated using embedded rules. Any errors must be corrected before being saved and submitted.
- Quality control by the Departments of Health: Upon monthly submissions to the state-based Departments of Health, the data is processed for quality issues. Any errors are sent back to the facility for correction. Annual reconciliation and death clearance is also performed to ensure 100% data submission of reportable cases.
- Quality control by American College of Surgeons Commission on Cancer: For facilities participating in accreditation, monthly reporting of analytic cases to the Rapid Cancer Reporting System (RCRS) and annual reporting to the National Cancer DataBase (NCDB) is required. At time of annual reporting, another level of quality review is conducted on 100% of cases submitted. Errors must be corrected in accordance with standards. The Commission on Cancer also provides a report outlining Data Completeness and Default Overuse which is expected to be reviewed when published.