Newswires
National Kidney Foundation Patient Network: Kidney Diseases and Conditions – Alport Syndrome
2022 AUG 25 (NewsRx) -- By a
As a matter of record, on
Tracking Information
| Trial Identifier | NCT05497518 |
| First Submitted Date | |
| First Posted Date | |
| Results First Submitted Date | Not Provided |
| Results First Posted Date | Not Provided |
| Last Update Submitted Date | |
| Last Update Posted Date | |
| Primary Completion Date | |
| Actual Start Date | |
| Current Primary Outcome Measures | •Total number of enrolled participants [ Time Frame: 5 years ] -- Reach 10,000 enrolled participants |
| Current Secondary Outcome Measures | Not Provided |
| Other Outcome Measures | Not Provided |
| Change History | Complete list of historical revisions of study NCT05497518 |
Descriptive Information
| Brief Title | A National Registry for People With All Stages of Kidney Disease: the |
| Official Title | National Kidney Foundation Patient Network |
| 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 NKF Patient Network (NKFPatientNetwork.org). The NKF Patient Network 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 Network 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 NKF also partnered with the |
| Detailed Description | The NKF Patient Network is a longitudinal prospective and retrospective observational cohort study of patient-entered data that collaborates with health systems to obtain additional electronic health records (EHR) data. The NKF also partnered with the |
| Study Type | Observational [Patient Registry] |
| Study Phase | Not Provided |
| Study Design | Observational Model: Cohort |
| Time Perspective: Prospective | |
| Target Follow-Up Duration | 50 Years |
| Condition | Chronic Kidney Disease |
| Dialysis | |
| Kidney Transplant | |
| Alport Syndrome | |
| Intervention | •Other: Observational study - registry |
| The Network 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 Arms | •People with chronic kidney disease |
| No interventions will be administered as part of this registry. | |
| Interventions: | |
| ⚬Other: Observational study - registry |
Recruitment Information
| Recruitment Status | Recruiting |
| Estimated Enrollment | 50000 |
| Estimated Completion Date | |
| Primary Completion Date | |
| Eligibility | Inclusion Criteria: Patients with any stage of CKD, including kidney transplant recipients and patients on dialysis. Age 18 years and above. Patients with Alport syndrome who decide to register to the NKF Patient Network |
| •Alport Syndrome can be of any age. Willing to participate in the NKF Patient Network and complete the informed consent form and assent form (where applicable). Able to participate in this NKF Patient Network, which initially will be in English and then eventually expand to other languages. Patients affiliated with |
|
| Sex/Gender | Sexes Eligible for Study: All |
| Ages | 18 years to 120 years |
| No | |
| Contacts | Primary contact: Lesley A Inker, MD, MS, 617-636-2569, [email protected] |
| Backup contact: |
|
| Listed Location Countries | |
| Removed Location Countries |
Administrative Information
| NCT Number | NCT05497518 |
| Other Study ID Numbers | 10-500-1060 |
| Has Data Monitoring Committee | Not Provided |
| Not Provided | |
| Plan to Share Data | No |
| Plan to Share Data (IPD) Description | Not Provided |
| Collaborators | |
| Investigators | Study Director: |
| Information Provided By | |
| Verification Date |
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