Home › Chronic Kidney Disease › NCT05497518

The KidneyCARE (Community Access to Research Equity) Study

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)

Who can join

Ages 18 to 120 · All sexes

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

About the study

For chronic kidney disease (CKD), there is a lack of unique and powerful platform for patient engagement, research studies and public health advocacy work. The National kidney Foundation (NKF) launched the first nationwide registry for people at all stages and types of CKD, including people on dialysis and kidney transplant recipients, called the KidneyCARE Study (kidneycarestudy.org). The KidneyCARE Study is a non-interventional research study which means participants will not have to take medications or do any additional tests to participate. They are simply asked to share some personal and health information, and their experiences with their disease through a secure portal. The Study also collaborates with health systems to obtain additional electronic health records (EHR) data. This unique combination of data collected will address the gap of individualized educational resources and will enhance clinical research, clinical care, and health policy decisions to be centered on the patient. The Study is all online and can be accessed any time of day at kidneycarestudy.org. Participation is voluntary and free.

What is being tested

• Observational study - registry (other)

Sponsor: Tufts Medical Center · Participants: 50,000 · Started: Feb 25, 2021

Contact the study team

• Lesley A Inker, MD, MS · Phone: 617-636-2569
• Kerry Willis, PhD · Phone: 212-889-2210

Official record on ClinicalTrials.gov — NCT05497518

Locations in the U.S.

Conditions

• Chronic Kidney Disease

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.