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Kidney Week

Abstract: PO1576

First in Canada: A Comprehensive Autosomal Dominant Polycystic Kidney Disease (ADPKD) Patient Registry in British Columbia (BC)

Session Information

Category: Genetic Diseases of the Kidneys

  • 1001 Genetic Diseases of the Kidneys: Cystic

Authors

  • Gradin, Sharon, BC Provincial Renal Agency, Vancouver, British Columbia, Canada
  • Williams, Janet Lynn, BC Provincial Renal Agency, Vancouver, British Columbia, Canada
  • Levin, Adeera, The University of British Columbia, Vancouver, British Columbia, Canada
  • Djurdjev, Ognjenka, BC Provincial Renal Agency, Vancouver, British Columbia, Canada
  • Kong, Sanford, BC Provincial Renal Agency, Vancouver, British Columbia, Canada
  • Jackson, Karin, BC Provincial Renal Agency, Vancouver, British Columbia, Canada
  • Bevilacqua, Micheli U., The University of British Columbia, Vancouver, British Columbia, Canada
Background

Early identification, assessment of renal progression and implementation of appropriate treatments are key components of modern ADPKD care. Existing BC Renal programs focus on patients in later disease stages when they access chronic kidney disease clinics, renal replacement modalities, or renal formulary drugs, but data capture of early stage ADPKD patients is limited. A comprehensive ADPKD patient registry was created to enhance identification and understanding of ADPKD in BC.

Methods

The registry was created within PROMIS, the dedicated BC Renal database. A specific focus was registration of patients seen in nephrologists’ private offices, prior to enrollment in other BC Renal administered services.

Minimum registry data set included basic patient name, date of birth, provincial healthcare number and diagnosis. Laboratory and outcome data are captured via existing PROMIS infrastructure. A streamlined registration process was developed with stakeholder feedback. Time-limited reimbursement was provided to nephrologists’ office to support the new workflow of identifying and registering patients.

Results

With the ADPKD registry, the number of ADPKD patients registered in PROMIS has increased from 545 to 1065 between January 2015 to January 2020. The increase in patient registration has been most prominent in early stage patients not on dialysis or transplant (increased from 237 to 703). In those not on dialysis or transplant increase in patients registered was most pronounced in those at earlier CKD stages; from 2015 to 2020, in those with eGFR<15ml/min, registration increased from 27 to 34 patients, with eGFR 15-30ml/min registration increased from 97 to 98, with eGFR 30-45ml/min registration increased from 43 to 117, with eGFR 45 to 60ml/min registration increased from 19 to 109, and in those with eGFR >60ml/min, registration increased from 32 to 237 patients.

Conclusion

Through creation of a comprehensive ADPKD registry, greater numbers of ADPKD patients have been identified in BC, particularly patients earlier in their disease course. The registry will continue to build on this with next steps including enhancements to clinical data, patterns of treatment use, quality metrics for care delivery, and clinical outcomes.

Funding

  • Commercial Support