When we first set out to recruit patients into our newly launched patient registry a year ago, the task seemed impossible. Would patients recognize the value of sharing their health data to help advance kidney disease treatments? Would the database reach the necessary mass required for researchers to make meaningful advances? Now, on the first anniversary of the launch, we know the answer to these questions is "Yes."
Our path is clear: We need you to help shape the future of kidney disease research. Join over 1,200 people across the United States who are already paving the way and changing the face of kidney disease.
What is the NKF Patient Network?
The NKF Patient Network is the first online registry for people with all stages and types of kidney disease. It allows participants to advance research by contributing their data, perceptions, priorities, activities, and emotional and physical states with kidney disease over time. The Network is also a one-stop shop designed to enhance care through individualized education, tips, and support.
A treasure trove of resources
Gathering information about kidney disease across multiple sources can get confusing quickly. Instead of scouring the web, join The NKF Patient Network. This secure hub offers a rich collection of resources curated to help each individual better understand and manage their kidney disease. These include:
- Kidney Pathways: Get personalized information specific to the stage and type of kidney disease.
- Clinical trials: Find relevant clinical trial opportunities.
- Online communities: Be part of a supportive community that understands what it's like to live with kidney disease.
- Latest research and tips: Access easy-to-understand summaries of the latest research and receive valuable nutrition tips.
Increasing diversity in the NKF Patient Network
One of the NKF Patient Network's main goals is to gather a more representative and diverse group of people with kidney disease. Everyone's experience matters. These stories, along with electronic health data, could be the key to helping researchers create a fuller picture of kidney disease in the US, learn how it progress, and where to go from here.
In particular, the registry hopes to identify symptoms or indicators of kidney disease in people with earlier stages of kidney disease. Currently, most of the only known symptoms are in more advanced kidney disease (stages four and five) and in kidney failure.
According to NKF's Chief Scientific Officer, Dr. Kerry Willis, the National Kidney Foundation has big plans to increase the inclusivity of the NKF Patient Network in the coming years. These efforts include creating a steering committee of community leaders with experience in health, education, and clinical trials. With the help of these incredible leaders, the NKF Patient Network hopes to reach and help more people with kidney disease.