The KidneyCARE (Community Access to Research Equity) Study
Recruiting · NCT05497518 · Observational (researchers observe without assigning treatment) · Lead sponsor: Tufts Medical Center
View the official record on ClinicalTrials.gov →Interventions studied
What this trial is about
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.
Who can take part
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
Where it is running
1 location listed across 1 US state.
- Geisinger Clinic - Danville, Pennsylvania, United States