SJCARES

Registry

 
 
Two women talking to each other at Global Alliance meeting

The SJCARES Registry tool is a new hospital-based pediatric cancer registration and reporting system. Using an intuitive and secure cloud-based platform, the program is designed specifically for low- and middle-income country contexts so only the relevant information is collected. 

All data is owned by the individual member hospitals. St. Jude provides central quality control and assurance, along with easy reporting to help support population-based cancer registries. SJCARES Registry provides opportunities to engage and grow the registry and participate in global research. 

  1. 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.

    SJCARES registration modules graphics

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

    SJCARES Scalable Data Architecture graphic

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

    SJCARES "Workflow: Keep it simple" graphic
    • 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
  2. Watch demonstration of the SJCARES Registry tool

     
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    • 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)

  3. 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)

  4. 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.

    SJCARES design approach graphic

    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)

  5. 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. 

  6. SJCARES Registry also provides educational resources.

    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

    Training Curriculum for Pediatric Cancer Registration

    In efforts 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.

    • Design-based research approach for iterative cycles of refinement and revision of instructional materials with a team of cancer registry directors, pediatric oncologists, clinical research associates (CRA) and instructional designers. This approach includes:
      • 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. Content is developed by a CRA, reviewed by pediatric oncologist and educator, and feedback is provided by a global panel of pediatric cancer registry experts. 
    • Cancer registration curriculum consists of:
      • Seven modules, 20 lessons and 59 learning objectives
      • Topics include principles of registration, classification and coding, staging, treatment, follow-up and cancer epidemiology
    • Tutorial on effectively navigating the database system, TrialMaster (TM)

    Registry Training Specifics

    MD Monitor (must be a physician)

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

    Data Entry Specialist without medical background

  7. SJCARES "Steps to join the registry platform" graphic

Meet the Team

      • Director, Clinical Trials Management
      • Senior Coordinator, Research Operations
      • Clinical Research Associate, Research Operations
    • Yayra Tuprah

      Tuprah

      • Director, Clinical Research Systems
    • Carlton Bradley

      Bradley

      • Programmer, Clinical Research Informatics
    • Andrew Pappas

      Pappas

      • Manager, Information Technology
  1. Phase I

    Phase 1 beta testing team map

    Phase II

    Phase II beta testing team map
  2. Nickhill Bhakta, MD, MPH
    Director, Disease Burden & Simulation
    St. Jude Global Pediatric Medicine
    Memphis, Tennessee, USA

    Alisha C. Gray, MPH
    Project Coordinator, Disease Burden & Simulation
    St. Jude Global Pediatric Medicine
    Memphis, Tennessee, USA

    Joanne Aitken, BSc (Hon), MSc, PhD
    Director, Australia Childhood Cancer Registry
    Cancer Council Queensland
    Brisbane, Australia

    Soad Linneth Fuentes Alabi, MD, MPH
    Benjamin Bloom Children’s Hospital
    San Salvador, El Salvador

    Carlton Bradley
    Programmer, Clinical Research Systems
    St. Jude Children’s Research Hospital
    San Diego, California, USA

    Lane Faughnan, BSN, CCRP
    Senior Coordinator, Research Operations
    St. Jude Global Pediatric Medicine
    Memphis, Tennessee, USA

    Gia Ferrara, MSGH
    Clinical Research Associate, SJCARES Registry
    St. Jude Global Pediatric Medicine
    Memphis, Tennessee, USA

     

    Tezer Kutluk, MD, PhD, FAAP
    Hacettepe University
    Department of Medicine & Cancer Institute
    Ankara, Turkey

    Paula Naidu, MPH, CCRP
    Director, Clinical Trials Management
    St. Jude Global Pediatric Medicine
    Memphis, Tennessee, USA

    Andrew Pappas
    Manager, Global Information Technology
    St. Jude Global Pediatric Medicine
    Memphis, Tennessee, USA

    Karina Braga Ribeiro, DDS, PhD
    Santa Casa de São Paolo
    Department of Medical Sciences & Public Health
    São Paolo, Brazil

    Yayra Tuprah, BSc
    Director, Clinical Research Systems
    St. Jude Children’s Research Hospital
    Memphis, Tennessee, USA

    Danny Youlden, BSc
    Biostatistician, Australian Childhood Cancer Registry
    Cancer Council Queensland
    Brisbane, Australia

    Carlos Rodriguez-Galindo, MD
    Chair, Global Pediatric Medicine
    St. Jude Children’s Research Hospital
    Memphis, Tennessee, USA