Registry

SJCARES includes three registration modules that make up the global hospital-based childhood cancer network. The Core Registry is available today, while the Extended Registry and Adverse Events Module will be launched soon.

The SJCARES Registry will grow as your data needs and capacity for data entry grow.

 Designed to support a hospital workflow in busy hospitals where data entry support is limited.

• The first free, secure and thoughtfully crafted pediatric hospital-based cancer registry
• Standardized global platform with only necessary data collected
• All data owned by the individual member hospitals
• St. Jude can provide central quality control and quality assurance
• Opportunities to engage and grow registry together
• Easy reporting to help support population-based cancer registries
• Chance to participate passively and actively in SJCARES global research

Watch demonstration of the SJCARES Registry tool

• A cloud-based solution for pediatric hospital-based cancer registry data collection.
• Works with all major modern internet browsers.
• Proven functional in many countries and even with slow internet connections.

View User’s Manual (PDF)

All data is contractually owned by the individual member hospitals. Local registry teams can download their data at anytime into one of several file formats for quality improvement or research purposes. St. Jude does stipulate that anytime the data is used for publication, all local ethics review procedures are followed.

Additionally, the SJCARES Registry provides opportunities for all St. Jude Global Alliance members to engage the registry data and participate in global research together. As part of a data use agreement, St. Jude will deidentify and store the data as part of the SJCARES data warehouse. Any investigator from a participating hospital may actively propose and conduct research on these de-identified datasets in accordance with the policies and procedures of the St. Jude Global Alliance. Furthermore, anytime data from a hospital is used in a St. Jude Global Alliance study, a minimum of one investigator from the hospital will be eligible for co-authorship on any subsequent publication.

View Sample Data Transfer Agreement (PDF)

The SJCARES Registry: 

• Is the product of a multidisciplinary effort with input from collaborators in every St. Jude Global Alliance region.
• Addresses a need for global standards to support pediatric hospital-based cancer registries.
• Allows hospitals to collect data to improve the quality of care at the local level and share data with population-based registries at the national level. 

We have taken an iterative design approach to ensure the system meets the needs.

Careful consideration was given to ensure that the data collected is the key data hospitals need to make and track the impact of important decisions. Examples include:

• ICD-O-3 coding and Toronto Consensus staging criteria 
• Basic treatment data capture
• Follow-up/abandonment tracking

View Data Dictionary (PDF)

Physical servers for SJCARES Registry are securely maintained. The data is protected through a series of measures, including point-to-point encryption, data server encryption and data segmentation. St. Jude provides regular external audits of physical and logical security measures and practices in data center.  Protected  health information is hidden from St. Jude staff and is not viewable. The registry was built using OmniComm (OCMC) Trialmaster, an external third party.  

Industry best-practices are used by SJCARES: 

• Meets United States FDA and European GDPR requirements
• Microsoft Azure platform used to manage identity and access
• Requires second-factor authentification by phone, email, text or application

View Security FAQs (PDF)

St. Jude de-identifies data in the SJCARES databank. Members can apply for data access to conduct a global or regional study. After the St. Jude Global Alliance steering committee reviews and approves the study, members are provided access and support for publication. 

SJCARES Registry also provides educational resources.

Training Curriculum for Pediatric Cancer Registration

To provide a scalable solution for initial and continuing education for learners who work with pediatric cancer registries in low- and middle-income country (LMIC) settings, we developed an asynchronous, competency-based educational curriculum.

• A design-based research approach allowed for iterative cycles of revision and refinement of instructional material. This approach included:
  • Scoping review of available cancer registration training materials
  • Formulation of core-competencies and learning objectives grouped hierarchically as modules and lesson plans to form a syllabus
  • Development of course content and assessment questions through a three-stage iterative, peer-review process.
    1. Initial content developed by a clinical research associate (CRA).
    2. Content then reviewed by educators and pediatric oncologists.
    3. Feedback provided by a global panel of pediatric cancer registry experts.
• Breakdown of the cancer registration curriculum:

Cure4Kids

Cure4Kids, an initiative of the St. Jude Children's Research Hospital Department of Global Pediatric Medicine, is an online resource for healthcare professionals around the globe who focus on life-threatening childhood diseases. Cure4Kids enables the web-based SJCARES Registry curriculum to be freely accessible to registered users.

View Cure4Kids website

Registry Training Specifics

MD Monitor (must be a physician)

Data Entry Specialist with medical (MD/RN) professional background

Data Entry Specialist without medical background

Phase I

Phase II