GOAL: To collect patient-reported information from NS patients all over the world in a centralized location that will be easily accessible for researchers. By encouraging patients to join and share their health information themselves, the NKN tries to empower the patient community and engage them meaningfully in the research process. The NKN can also help connect patients to clinical research opportunities that they may be interested in.
WHO CAN PARTICIPATE: Any patient with a Primary Nephrotic Syndrome condition can participate, from anywhere in the world. In fact, the NKN has participants from 33 countries!
COMMITMENT: Participants spend 30-45 minutes after consenting to share their information answering surveys online about their medical history, their preferences about research, how they feel, and their family background. Participants are then asked to update their information every 6 months, and can choose to receive information about research studies that they may be interested in.
WHY IT IS IMPORTANT: The NKN is a useful tool in connecting patients to research studies, thus allowing research to happen faster. The information provided by patients in the NKN can also influence what research is conducted, making sure that patients’ have a say in the process. Finally, the NKN is a patient-powered research network, and encourages patients and their families to pay attention to research and be more involved.