Abstract
BACKGROUND
The MONitoring Dialysis Outcomes (MONDO) initiative is an academia-industry collaboration whereby providers can contribute data to an anonymized dataset used for joint research purposes. We present the characteristics of 20 years of longitudinal patient data contributed to the new MONDO dataset, which is now the most robust global dialysis dataset in the world.
METHODS
Data from Jan 2000-Dec 2019 on 382 fields was captured longitudinally on a per patient per observation level (e.g., each lab, treatment, value) with a universal data structure. Detailed distribution statistics were used for re-identification risk assessment and confirmed the anonymization logic for providers to apply and provide acceptably low risk, consistent with international data privacy standards (e.g., GDPR, HIPAA). Final datasets were consolidated and hosted by the Renal Research Institute.
RESULTS
Nine providers from 41 countries across six continents contributed to MONDO (289,715 patients across 20 years). Hemodialysis was the most used modality globally (Table 1). In Europe, Middle East & Africa, 63.2% of patients used hemodiafiltration (HDF) for ≥1 treatment. Peritoneal dialysis (PD) was used in 20% of patients in Latin America (LA) (20%) and 15% in North America (NA), yet ambulatory PD was more frequent in LA, while cycling PD was more frequent in NA. 11% of patients received a transplant. 42.5% died or stopped dialysis with some regional variability.
CONCLUSION
MONDO developed a new global research dataset to study dialysis outcomes, pathophysiology, and risk prediction. MONDO is open to collaboration and contributions without geographic restrictions.
The MONitoring Dialysis Outcomes (MONDO) initiative is an academia-industry collaboration whereby providers can contribute data to an anonymized dataset used for joint research purposes. We present the characteristics of 20 years of longitudinal patient data contributed to the new MONDO dataset, which is now the most robust global dialysis dataset in the world.
METHODS
Data from Jan 2000-Dec 2019 on 382 fields was captured longitudinally on a per patient per observation level (e.g., each lab, treatment, value) with a universal data structure. Detailed distribution statistics were used for re-identification risk assessment and confirmed the anonymization logic for providers to apply and provide acceptably low risk, consistent with international data privacy standards (e.g., GDPR, HIPAA). Final datasets were consolidated and hosted by the Renal Research Institute.
RESULTS
Nine providers from 41 countries across six continents contributed to MONDO (289,715 patients across 20 years). Hemodialysis was the most used modality globally (Table 1). In Europe, Middle East & Africa, 63.2% of patients used hemodiafiltration (HDF) for ≥1 treatment. Peritoneal dialysis (PD) was used in 20% of patients in Latin America (LA) (20%) and 15% in North America (NA), yet ambulatory PD was more frequent in LA, while cycling PD was more frequent in NA. 11% of patients received a transplant. 42.5% died or stopped dialysis with some regional variability.
CONCLUSION
MONDO developed a new global research dataset to study dialysis outcomes, pathophysiology, and risk prediction. MONDO is open to collaboration and contributions without geographic restrictions.
Original language | English |
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Publication status | Published - 2023 |
Event | American Society of Nephrology: Kidney week - United States, Philadelphia Duration: 2 Nov 2023 → 5 Nov 2023 https://www.asn-online.org/education/kidneyweek/ |
Conference
Conference | American Society of Nephrology |
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City | Philadelphia |
Period | 2/11/23 → 5/11/23 |
Internet address |