It has just been announced that the very first national registry for chronic kidney disease (CKD) patients (at all stages of disease) will be launched next year. The creation of this registry has been organized by the National Kidney Foundation (NKF). It will be called The NKF Patient Network.

The Why

When data is spread out, it is often easy to miss. Likewise, even if the most brilliant researcher is investigating a topic, if they do not have access to the data they need, there is no way for them to make a life-altering discovery. The comprehensive organization of data is essential for ensuring the right data is in the hands of the individuals who best know how to utilize it.

Currently, there is no other CKD patient registry which combines data from electronic health records with comprehensive patient data. This 360-degree view of each individual patient is essential because it will ensure that the individual is being matched with the treatment, specialists, and resources that will best benefit them.

“It will enable us to better design patient education resources, more targeted care, and more patient-centered clinical trials to discover new treatments.”

What Will be Included

Essentially, this network will be an online community of CKD patients which will be interactive. It will bring together health history data from electronic health records as well as patient opinions and personalized preferences. The network is designed with several different goals in mind.

To Collect:

• Demographics
• Lifestyle
• Diet
• Stage of CKD
• Co-morbidities
  • Diabetes
  • Hypertension
  • Heart Disease
• Medical history
• Medications
• Laboratory values

To Provide:

• Individualized patient support/resources/research
• Patient education
• Ease of clinical trial recruitment
• Patient input
• Database on patient outcomes, priorities, and perceptions

To Impact:

• Clinical care
• Policy decisions
• Research

Who Will Benefit

The ultimate goal is that this Network will turn into an invaluable resource for researchers aiming to find more effective therapies for those living with CKD. The founders hope it will spark collaboration and ultimately lead to the improved quality of life of CKD patients.

One of the ways the founders anticipate this registry aiding research is in the understanding of the relationship between CKD and the co-morbidities often associated with the condition such as diabetes and heart disease. This increased understanding could ultimately improve the rate of early diagnosis in addition to improving treatment options.

This platform will aid research, patient engagement, and advocacy initiatives, all working to benefit CKD patients.

How it is Being Developed

The developers admit they know there is still much they need to learn as they undertake this process. But they are sure that the impact this registry will have will be profound for generations to come.

The network’s development is being guided by the NKF Patient Network Steering Committee. This committee includes researchers, regulators, academics, industry partners, and most importantly, patients.

PulseInfoFrame is working to test the patient portal. They are also conducting a feasibility study which will evaluate how the electronic health data is gathered from both health system partners and self-enrolled individual patients.

Their goals for this platform are simple. They want it to be easy to use and effective.

When it’s Coming

The NKF plans to launch the network in February of 2020. This launch will include patient recruitment for the registry. However, the network’s global launch won’t be until 2021.

How to Get Involved

The NKF welcomes healthcare professionals to join their organization. This will provide an expansive access to resources and tools. Additionally, it will connect them to others studying the same disease. Wherever there is collaboration and the mixing of minds, there are improved outcomes.

The NKF strives to achieve three things- awareness, prevention, and treatment for CKD. They are the largest patient-centric organization of their kind. This new network will only amplify the impact they are able to have on this patient community.

You can read more about the process of creating this registry and how it will be used here.