A nationwide registry for chronic kidney disease patients
Official title: The KidneyCARE (Community Access to Research Equity) Study: A National Registry for People With All Stages of Kidney Disease (Formerly National Kidney Foundation Patient Network)
Run by Tufts Medical Center · NCT05497518 · Data updated 2026-11-12
This study is creating a detailed registry for people with chronic kidney disease, including those on dialysis or who have had a transplant, to help improve their care and support.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years to 120 Years |
| Sex | All |
| Enrollment | 50000 (estimated) |
| Sponsor | Tufts Medical Center Academic / other |
| Locations | 1 site (Danville, Pennsylvania) |
| Status | Recruiting |
| Started | February 25, 2021 |
| Main results expected | February 24, 2070 |
| Study ends | February 24, 2070 |
| Registry record updated | October 26, 2026 |
| Trial ID | NCT05497518 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include adults aged 18 and older with any stage of chronic kidney disease, including those on dialysis or who have received a kidney transplant.
✕Probably not a fit
Patients under 18 years old or those not diagnosed with chronic kidney disease will not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The KidneyCARE Study is an observational cohort study designed to create a comprehensive registry for individuals with chronic kidney disease (CKD), including those on dialysis and kidney transplant recipients. Participants will share personal and health information through a secure portal, and the study will also gather electronic health records (EHR) data from collaborating health systems. This dual approach aims to enhance patient engagement, clinical research, and health policy decisions by addressing the need for individualized educational resources. The study is approved by the Tufts Health Sciences Institutional Review Board and will begin recruiting patients outside the U.S., starting in Canada.
Why it matters
Potential benefit: If successful, this study could provide valuable insights and resources to improve the care and management of chronic kidney disease patients.
How similar studies have gone: Other studies have successfully utilized patient registries for chronic conditions, indicating a promising approach for this study.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Patients with any stage of CKD, including kidney transplant recipients and patients on dialysis. * Age 18 years and above. * Willing to participate in the Study and complete the informed consent form and assent form (where applicable). * Able to participate in this Study, which initially will be in English and then eventually expand to other languages. * Patients affiliated with Geisinger Health System must have given their consent to Geisinger Health System IRB to be contacted for research projects. Exclusion Criteria: * Patient not diagnosed with CKD * Age below 18 years * Not willing to participate in the Study as well as unwilling to complete the informed consent form
Where it's running
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Geisinger Clinic
Danville, Pennsylvania, United States Recruiting
Study contacts
- Study coordinator: Lesley A Inker, MD, MS
- Email: LInker@Tuftsmedicalcenter.org
- Phone: 617-636-2569
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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How kidney transplant affects blood flow in the heart's tiny vessels in people with advanced CKD
This study will try to see if getting a kidney transplant improves blood flow in the small vessels of the heart for people with advanced chronic kidney disease who are on the transplant waitlist.
-
Cardiovascular health in children and young adults with chronic conditions
This project will see if children and young adults (ages 6-25) with chronic health conditions show early signs of aging in large and small blood vessels using noninvasive imaging and clinical tests.
-
Using Empagliflozin to Improve Outcomes in Kidney Transplant Recipients
This study is testing if the medication Empagliflozin can help improve kidney function and heart health in veterans who have received kidney transplants.
-
Exercise program for kidney transplant recipients
This study is testing whether a structured exercise program can help older patients waiting for a kidney transplant improve their physical function and walking ability compared to those who just receive regular care.
-
Observational look at how Kremezin works in adults with advanced chronic kidney disease
This study tests whether Kremezin helps adults with advanced kidney disease when used as part of routine care, by tracking safety and kidney function over up to 48 weeks.
-
Italian Registry of Pediatric Dialysis: collecting data from kids on kidney replacement therapy
This registry in Italy tests how collecting epidemiological, clinical, and treatment data from children on dialysis or pre-emptive kidney transplants can help centers share protocols and improve care.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.