The KidneyCARE (Community Access to Research Equity) Study

Part of paid clinical trials in Danville, Pennsylvania.

Sponsor
Tufts Medical Center
Study ID
NCT05497518
Status
Recruiting

Conditions

Eligibility Criteria

Sex
ALL
Age
18 Years - 120 Years
Healthy Volunteers
Not accepted

Interventions

  • Observational study - registry — OTHER
    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.

Study Details

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.

Key Dates

Start date
Feb 25, 2021
Status verified
May 2025
Primary completion
Feb 24, 2070
Completion
Feb 24, 2070

Study Design

Enrollment
50,000 participants (estimated)

Arms

  • Arm: People with chronic kidney disease
    No interventions will be administered as part of this registry.

Primary Outcome Measure

Total number of enrolled participants [ Time Frame: 5 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Geisinger ClinicDanvillePennsylvania17822
Alexander Chang, MD, MS
866-207-9289
Lauren Brubaker, MPH
570-271-6393
Alexander Chang, MD, MS (PRINCIPAL_INVESTIGATOR)

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