A nationwide registry for chronic kidney disease patients
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)
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 |
|---|---|
| Enrollment | 50000 (estimated) |
| Ages | 18 Years to 120 Years |
| Sex | All |
| Sponsor | Tufts Medical Center Academic / other |
| Locations | 1 site (Danville, Pennsylvania) |
| Trial ID | NCT05497518 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
Not a fit: Patients under 18 years old or those not diagnosed with chronic kidney disease will not benefit from this study.
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 performed: Other studies have successfully utilized patient registries for chronic conditions, indicating a promising approach for this study.
Eligibility criteria
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 this trial is running
Danville, Pennsylvania
- Geisinger Clinic — Danville, Pennsylvania, United States (Recruiting)
Study contacts
- Study coordinator: Lesley A Inker, MD, MS
- Email: LInker@Tuftsmedicalcenter.org
- Phone: 617-636-2569
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.