RecruitingNCT05497518

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)


Sponsor

Tufts Medical Center

Enrollment

50,000 participants

Start Date

Feb 25, 2021

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Min Age: 18 YearsMax Age: 120 Years

Plain Language Summary

Simplified for easier understanding

The KidneyCARE Study is a research program aimed at improving access to kidney disease research for all communities, especially those who have historically been underrepresented in medical studies. It collects health information to better understand chronic kidney disease (CKD) across different populations. **You may be eligible if...** - You have been diagnosed with any stage of chronic kidney disease (CKD), including if you are on dialysis or have had a kidney transplant - You are 18 years or older - You are willing to complete the consent form and participate **You may NOT be eligible if...** - You have not been diagnosed with CKD - You are under 18 years old - You are unwilling to give consent to participate Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

Interested in this trial?

Get notified about updates and connect with the research team.

Interventions

OTHERObservational study - registry

The Study is a longitudinal observational cohort study that collaborates with health systems to obtain both electronic healthcare records (EHR) and patient-entered data. Eligible people with a diagnosis of chronic kidney disease at any stage, age 18 years and above, are identified through EHR data review, referral by a provider, or are recruited through the NKF's outreach campaign. Patients self-enroll into the online registry and share their experiences and health data through a secure portal where they can also find education, tips, and support. Research partners can view aggregate data through a collaboration portal.


Locations(1)

Geisinger Clinic

Danville, Pennsylvania, United States

View Full Details on ClinicalTrials.gov

For the most up-to-date information, visit the official listing.

Visit

NCT05497518


Related Trials