Research & Data Process
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The flowchart above outlines the general process for conducting a research project. First starting with the idea phase, where a research question is identified. This leads to the planning phase, involving literature review, DCP, protocol and approvals. Next is data collection, where methods such as using specified databases, conducting interviews and/or surveys may be utilized. This is followed by data analysis where the collected data is processed and interpreted. Abstract and manuscript writing involving explaining findings, methodology and significance and submitting for a presentation and/ or publication. Lastly, after review and approval, a publication is granted for a wider audience to access through various journals.
Interactive Clinical Research Study Startup Checklist
The purpose of this tool is to produce a customized startup checklist for any type of clinical research study at the University of Calgary.
Chart Review
Chart review involves the examination of patients' medical records to collect data for research purposes. This method is commonly used to extract specific information about patients' demographics, treatments, and outcomes, which can help answer research questions. Chart review is used when additional data is needed besides what is included in the Sphere dataset, which consists of deidentified data and serves as a foundation for analyzing trends, outcomes, and treatment pathways in breast cancer care.
Chart Review Process
SPHERE Dataset
Our work is built on the comprehensive SPHERE dataset, which encompasses twenty years of deidentified data from women diagnosed with breast cancer across Alberta. This dataset provides a foundation for analyzing trends, outcomes, and treatment pathways, enabling us to drive meaningful insights and innovations in breast cancer care. The dataset is deidentified data. If additional data is needed for a project, this is done through chart review or through access to additional datasets.
Data Sources
Alberta Cancer Registry (ACR)
Database of newly diagnosed cancers and deaths in Alberta, providing access to all cancer patient data from multiple sources in one place.
Includes:
- Population-based cancer registry for all cancers diagnosed in Alberta.
- Standard Diagnosis Information (diagnosis date, multiple primaries).
- Tumor and stage information at time of diagnosis.
- Mortality data (follow-up from Vital Status).
Availability for diagnosis of breast cancer:
- Diagnosis Date from January 1st, 2002 – December 30th, 2022.
- Follow-up data from April 12th, 2022 to November 14th, 2024.
EMR (Electronic Medical Records) database
- ARIA chemotherapy dataset: Type of systemic treatment, regimen, names of prescription, date of prescription or administration, and description of dose unit given. Systemic treatments include chemotherapy, hormonal therapy, immunotherapy and unspecified systemic treatment.
- Radiotherapy dataset: Type of radiotherapy treatment, regimen, names of prescription, date of prescription or administration, and description of dose unit given.
- Visit dataset: High and detailed level of classification of hospital visit type.
Medication Data
- Connect Care Admin dataset (Medication Administration data from CC): The date when an order of medication was placed, the date when medication was administered using an inpatient hospital setting.
- Connect Care Dispense dataset (Medication Dispense data from CC): The date when an order of medication was placed and the date when medication was administered using a pharmacy setting.
Administrative Data
Discharge Abstract Database (DAD)
Provides demographic, administrative, and clinical data from acute inpatient care and day surgeries, serving as a database primarily used for inpatient hospitalizations.
Availability: Admit Date from April 2002 – March 2024.
National Ambulatory Care Reporting System (NACRS)
Collects demographic, administrative, clinical and service-specific data. Is primarily used for emergency department (ED), urgent care, and same-day surgery visits. This database uses International Classification of Diseases (ICD) codes for diagnosis and Canadian Classification of Health Interventions (CCI) codes for procedures.
Diagnoses Identification:
- ICD-10-CA codes classify primary and secondary health conditions.
- Example: C50.9 for breast cancer (unspecified site).
Procedure Identification:
- CCI codes capture clinical interventions such as surgeries, imaging and therapies.
- Example: 1YM98 for a mastectomy.
Linking Care Episodes:
- Combining codes from both datasets provides a comprehensive picture of patient care, including inpatient stays, surgeries, and follow-up care inpatient and/or emergency settings.
Availability: Visit Date from April 2001 – March 2024.
Practitioner Claims
Contains information on physician service utilization, patient encounters, and payment records submitted through the Alberta Health Care Insurance Plan (AHCIP). Billing codes are primarily used from the database to identify specific surgical procedures and complementary treatments that may not be fully captured by CCI codes (Canadian Classification of Health Intervention).
Includes:
Mastectomy Types:
- 97.12A/ 97.12B: Mastectomy without reconstruction.
- 97.21: Mastectomy with immediate reconstruction.
Breast Reconstruction Procedures:
- 97.43: Implant reconstruction
- 97.95: Tissue expander reconstruction.
- 98.51B: Flap/ autologous reconstruction.
Availability: April 2002- March 2024.
Pharmaceutical Information Network (PIN)
Contains detailed records of pharmaceutical dispensations from community-based pharmacies across the province. Provides data on prescribed medications, enabling the identification of treatment regimens. Primarily use the Anatomical Therapeutic Chemical codes (ATC) to identify drugs related to specific treatments.
For example:
- Endocrine Therapy: ATC Code L02BA01 for Tamoxifen to track hormone therapy prescriptions.
Availability: January 1st, 2008 - 2024.
Vital Statistics -Death Registry (VS-DR)
Records of deaths occurring within the province of Alberta.
Includes:
- Demographic information
- Date
- Location
- Cause of death
- Autopsy information
Availability: Vital Statistics - Death Registry: April 2002- October 2024.
Provincial Registry (REG)
Provides demographic and geographic information from basic medical and hospital care claims. Data is collected from all eligible residents in Alberta with Alberta Health Care Insurance Plan (AHCIP) coverage. The number of registrants can be used as a base for population counts.
Availability: April 2000- April 2024.
Cancer Surgery Alberta’s Synoptec Database
Synoptec (Softworks, Edmonton) is a synoptic reporting platform in use for procedure, surgical and pathology reports within Alberta Health Services, including surgical details such as surgery type, date and margin status. Requests for further data can be made by filling a CSA Synoptec Data Request Form, which asks for an overview of the project, privacy considerations, what type of data is required and how it will be used in the project.
Template Downloads
Data Creation Plan (DCP) (doc)
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