Frequently Asked Questions

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 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.
  • Physician Review: Facilities accredited by the American College of Surgeons Commission on Cancer include physician review of registry data following the same steps performed by registry management.
  • 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, Pennsylvania Department of Health 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 saved.
  • Quality control by the Pennsylvania Department of Health. Upon monthly submissions to the PA Department 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, reporting to the National Cancer DataBase (NCDB) is required. At time of reporting, another level of quality review is conducted on 100% of cases submitted. Errors must be corrected.

You have two options:

  1. If you do not expect to retain identifiers, you may submit an IRB-exempt application using the Investigator with Patient Care Responsibilities approach. Complete the form and submit through OSIRIS. You may not be able to use the UPMC Network Cancer Registry since is assumed you will need data from more than one data source. 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.

    Only data that is in existence as of the date the protocol is submitted can be recorded under this exempt protocol.
    Under NO circumstances can identifiers (i.e., names, social security numbers, phone numbers, medical record numbers, street addresses, etc.) be recorded with the data, nor can linkage codes be used (even temporarily). The dataset must be completely anonymous.
    For that reason, once the information has been extracted from the medical record, it will not be possible for this study team to go back to that same medical record to add other patient-specific information to this research dataset, to verify data, or for any other reason. Also, this exemption is not appropriate when medical record data are coming from more than one source (e.g., multiple medical record offices/databases) when that linking process requires investigators to record linkage codes, even temporarily.
    If identifiers or linkage codes must be recorded, or if data is not currently in existence, the investigator should complete an expedited application with a request for a waiver of consent and a waiver of HIPAA Authorization. Please contact askirb@pitt.edu.

  2. If you need to retain identifiers and/or are using multiple data sources, including the UPMC Network Cancer Registry, it is recommended you complete an Expedited application with request for a waiver of consent and waiver of HIPAA Authorization.

If you require de-identified retrospective data only, you may submit an IRB-exempt application using the Medical Record Review using a Certified Honest Broker approach. Complete the form.
Be sure to include the following in your submission:

  • Reference to the Identity of the Honest Broker System or Process: University of Pittsburgh Department of Biomedical Informatics (DBMI), UPMC Department of Pathology, Health Sciences Tissue Bank (HSTB), Department of Otolaryngology of the Eye and Ear Institute, Magee Womens Hospital of UPMC, Women’s Cancer Research Center (WCRC), UPMC ISD/Pathology Informatics, UPMC ISD/Oncology Informatics and the UPMC Network Cancer Registry/ UPMC Cancer Centers Registry Information Services (RIS)
    Reference to our UPMC/IRB Honest Broker Approval Number: HB015
  • Reference to use of the UPMC Network Cancer Registry as a data source
  • Reference to the data elements needed from the UPMC Network Cancer Registry
  • If you need dates, be sure to select LIMITED DATA SET under question #3 on the form and explain the reason you need dates to conduct your final analysis (RECOMMENDED). Note, if you select DE-IDENTIFIED under question #3 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
  • A completed and signed copy of the Honest Broker Assurance Form for each honest broker involved in your project

Certain types of biological specimen collection procedures will require separate IRB approval:

  • The prospective, focused collection of a specific type of residual biological specimen (i.e., biological specimen remaining after clinical pathology assessment has been completed research needs cannot be met through existing specimens maintained by the HSTB).
  • The removal, from human subjects, of biological specimens solely for research purposes (i.e., the research use of non-residual biological specimens).
  • The collection, for research use, of biological specimens and/or annotating data to include patient-subject identifiers.
  • Projects that involve the utilization of pathology paraffin archives.
  • Please contact Susan Kelly or Luke Wiehagen for queries relating to the HSTB.

No, interested individuals may communicate directly with representatives from the UPMC Network Cancer Registry / Registry Information Services (RIS) by sending an email outlining the details of the request.

General Requests Sharon Winters, MS, CTR winterssb@upmc.edu
Research Requests Althea Schneider, BS, CTR schneideram2@upmc.edu
Mesothelioma Althea Schneider, BS, CTR schneideram2@upmc.edu
Breast & Gynecologic Cancers Louise Mazur, CTR mazurls@upmc.edu
Head and Neck Cancers Jennifer Ridge Hetrick, BS, RHIA, CTR hetrickjl@upmc.edu
Thoracic and Lung Cancers Karla Stewart, BS, CTR stewartkj@upmc.edu
Melanomas Kerry Trent, CTR trentkr@upmc.edu

DETAILS OF THE REQUEST SHOULD INCLUDE:

  • Date needed: include any specific deadline and please allow for at least two (2) weeks to process
  • Purpose: describe the general purpose of the request
  • Project Title: define a title for the project
  • Requestor: provide the full name, email address and phone number of the requestor
  • Recipient: provide the full name, email address and phone number of the person who is to receive the data
  • Range of Years Needed: define the time frame for the data needed
  • UPMC Facilities to Include: define which UPMC facilities should be included; refer to theĀ UPMC Network Cancer Registry Facilities list.
  • Data Needed: Describe the general data needed based on the following categories
  • Demographics (gender, race, age at diagnosis, zip/county of residence)
  • Diagnosis (primary site, morphology, grade, laterality)
  • Extent of Disease (AJCC stage, tumor size, lymph node involvement, distant metastasis at diagnosis, prognostic factors)
  • First Course of Treatment (type of treatment including biopsy, cancer directed surgery, chemotherapy, radiation therapy, immunotherapy, hormone therapy, other)
  • Outcomes (vital status, cancer status, months 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.

The data set collected by this cancer registry follows national and state requirements. There are strict rules for coding and quality control of each data element. Additional data elements are collected for disease-driven objectives. General data elements include:

  • Demographics (gender, race, age at diagnosis, zip/county of residence)
  • Diagnosis (primary site, morphology, grade, laterality, date of diagnosis)
  • Extent of Disease (AJCC stage, tumor size, lymph node involvement, distant metastasis at diagnosis, prognostic factors)
  • First Course of Treatment (dates and type of treatment including biopsy, cancer directed surgery, chemotherapy, radiation therapy, immunotherapy, hormone therapy, other)
  • Outcomes (date of last contact/death, vital status, cancer status, date of first recurrence, type of first recurrence, subsequent treatment)