PCORnet^®, the National Patient-Centered Clinical Research Network, aims to improve the nation’s capacity to conduct health research by creating a large, highly representative network for conducting clinical outcomes research. In 2020, PCORI launched an initiative on Conducting Rare Disease Research using PCORnet to answer important questions about the treatment and management of rare diseases or conditions. The initiative funded this research project and others.

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

Chronic kidney disease, or CKD, is a health problem in which the kidneys don’t work well to remove waste from the blood. About half of all children with CKD also have high blood pressure, which increases their risk of kidney failure. When the kidneys fail, patients lose most of their kidney function and need dialysis or a kidney transplant. Managing high blood pressure can help lower the risk of kidney failure.

In this study, the research team is comparing ways to monitor and treat high blood pressure in children with CKD.

Who can this research help?

Results may help parents of children with CKD and doctors when considering ways to monitor and treat high blood pressure.

What is the research team doing?

This study has three parts. The first part involves PCORnet^®, which is made up of networks of health systems. These networks gather data from electronic health records, or EHRs, and transform the data into a common format. PCORI funded PCORnet to make it easier to conduct research. The research team is adding new patient data on CKD to PCORnet. The team is also linking patients’ EHR data from PCORnet to other kidney disease databases.

In the second part, the research team is comparing different ways to monitor and treat high blood pressure in children with CKD to preserve kidney function. To do so, the team is looking at PCORnet EHR data from 11,851 children with CKD who were treated at 16 clinics across the country. These data include whether doctors decided to monitor children’s blood pressure in the clinic or at home. The team is comparing how well these two ways of monitoring blood pressure work to preserve kidney function. The team also wants to learn:

• When to start treatment
• Which medicines to start treatment with
• How low children’s blood pressure should be to prevent kidney damage

In the third part, the research team is surveying 800 children and their caregivers to learn about their experiences managing CKD. The survey also asks about children’s pain, fatigue, sleep, emotions, relationships with friends, and how happy they are with their lives.

Parents of children with CKD and doctors are helping to plan the study.

Research methods at a glance