The KidneyCARE (Community Access to Research Equity) Study
1 other identifier
observational
50,000
1 country
1
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Feb 2021
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
February 25, 2021
CompletedFirst Submitted
Initial submission to the registry
August 9, 2022
CompletedFirst Posted
Study publicly available on registry
August 11, 2022
CompletedPrimary Completion
Last participant's last visit for primary outcome
February 24, 2070
ExpectedStudy Completion
Last participant's last visit for all outcomes
February 24, 2070
May 13, 2025
May 1, 2025
49 years
August 9, 2022
May 7, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Total number of enrolled participants
Reach 10,000 enrolled participants
5 years
Study Arms (1)
People with chronic kidney disease
No interventions will be administered as part of this registry.
Interventions
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.
Eligibility Criteria
Patient recruitment targets two audiences: general public and closed systems. The general public is reached through a comprehensive outreach program that includes other NKF programs, local NKF field offices, participants from clinical trials for kidney disease treatments, referrals from other Network's participants, professional societies and patient advocacy groups, and a direct public relations campaign. The closed systems include health systems, academic medical centers, testing laboratories, or rare kidney disease groups. Here, patients will be recruited using the methods available at each organization (e.g., e-blasts, newsletters, provider/care manager recommendation, MyChart messages).
You may qualify if:
- 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.
You may not qualify if:
- 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
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Tufts Medical Centerlead
- National Kidney Foundation, United Statescollaborator
Study Sites (1)
Geisinger Clinic
Danville, Pennsylvania, 17822, United States
Related Publications (1)
Inker LA, Ferre S, Baliker M, Barr A, Bonebrake L, Chang AR, Chaudhari J, Cooper K, Diamantidis CJ, Forfang D, Gillespie B, Gregoriou P, Gwadry-Sridhar F, Ladin K, Maxwell C, Mitchell KR, Murphy KP, Rakibuz-Zaman M, Rocco MV, Spry LA, Sharma A, Tangri N, Warfield C, Willis K; NKF Patient Network Governance Committees. A National Registry for People With All Stages of Kidney Disease: The National Kidney Foundation (NKF) Patient Network. Am J Kidney Dis. 2023 Feb;81(2):210-221.e1. doi: 10.1053/j.ajkd.2022.07.016. Epub 2022 Sep 30.
PMID: 36191726BACKGROUND
Related Links
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- STUDY DIRECTOR
Kerry Willis, PhD
National Kidney Foudnation
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 50 Years
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
August 9, 2022
First Posted
August 11, 2022
Study Start
February 25, 2021
Primary Completion (Estimated)
February 24, 2070
Study Completion (Estimated)
February 24, 2070
Last Updated
May 13, 2025
Record last verified: 2025-05
Data Sharing
- IPD Sharing
- Will not share