Assessment of the Educational Experiences for Patients Newly Diagnosed With Nephrotic Syndrome

Assessment of the Educational Experience for Patients With Newly Diagnosed Nephrotic Syndrome

The purpose of this study is to learn about patient, caregiver and healthcare worker perspectives on educating patients with newly-diagnosed Nephrotic Syndrome. All patients enrolled in the Contact Registry with Nephrotic Syndrome will be invited via email to participate in this study.

The survey included questions addressing the following areas: 1.) Information that is important to know when learning to manage Nephrotic Syndrome. 2.) Preferred resources for the education of patients and caregivers with newly-diagnosed Nephrotic Syndrome. 3.) The time frame required to acquire confidence in the management of Nephrotic Syndrome. 4.) Disease-specific information such as diagnosis, length of disease duration, medications used, need for kidney biopsy, dialysis and/or transplant. 5.) Demographic data such as race/ethnicity and educational background.

The survey data is stored by the Rare Diseases Clinical Research Network's Data Management and Coordinating Center (DMCC) at the University of South Florida. The data is de-identified. Names or other personal health information were not collected. Upon conclusion of the study period, the data will be sent to the NEPTUNE consortium lead at the University of Michigan.

Inclusion Criteria:

Patient and Patient Caregiver:

• 18 years or older
• English literate
• History of Nephrotic Syndrome > 3 months or caregiver of a child diagnosed with Nephrotic Syndrome > 3 months prior to enrollment
• Informed Consent

Healthcare Worker Inclusion Criteria:

• Age > 18 years
• English literate
• Provides medical care for children or adults with Nephrotic Syndrome
• Informed Consent

Exclusion Criteria:

• Inability to provide informed consent and complete survey
• Other criteria as specified by Consortium and based on the data we collect in the Contact Registry