GOAL: To create a thorough database of clinical information (Electronic Health Records) from all patients that suffer from a primary NS condition. The information in this database can be used to find the best standards of care and the best treatment options for patients living with these diseases. It will also speed up the development of new treatments.
WHO CAN PARTICIPATE: Any patient seen at a NACI site can consent to share their electronic health records. Currently, there are NACI sites in Ann Arbor, MI, Charlotte, NC, and Los Angeles, CA. Over the next few years, NACI will expand to include 30 sites globally. Check here for updates about new sites.
If you are not near a NACI site, being a part of the NephCure Kidney Network is a step you can take to help reach the same goal!
COMMITMENT: Once patients agree to share their electronic health records with NACI, the NACI team does the rest! The commitment for patients is minimum.
WHY IT IS IMPORTANT: NACI is a very inclusive study – any patient with a Primary NS condition can share their information. By having patients share their electronic health records, doctors and researchers have access to a very detailed story of how the disease has progressed over time. They will be able to see which treatments work best for different types of patients. This information can be used to create research projects that are meaningful to patients. The information collected through NACI will also help us count the number of people living with a Primary NS condition and speed up the drug development process.