Online Registry Collecting Health Information From People With Kidney Disease
Collects health information and experiences from adults with chronic kidney disease, dialysis, or transplant.
Plain-language title generated from the registry record
Registry title: The KidneyCARE (Community Access to Research Equity) Study
Key facts
- Where
- Danville, United StatesSee the site
Could this be for you?
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 18 and 120 years old?
Source: NCT05497518, who can take part
Where in United States
- Geisinger ClinicDanville, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Tufts Medical Center
- Trial code
- NCT05497518
- Record updated
- 26 October 2026
- Original description
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.Read full original descriptionShow less
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)
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.
Inclusion: 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: Age below 18 years; Patient not diagnosed with CKD; Not willing to participate in the Study as well as unwilling to complete the informed consent form.