We have study goals: (1) To conduct phone interviews to ask about symptoms and life impact from adult patients living with PSC; (2) To lead community advisory board discussions to decide on using existing symptom measures 'as is', modify existing measures or develop new measures to evaluate PSC symptoms; and (3) To conduct interviews with adult patients with PSC to assess their understanding and comprehension of selected symptom measures. We plan to consent and enroll up to 75 patients into a Screening database. From the database, we will select up to 24 patients to interview for Aim 1 and up to 16 patients to interview for Aim 3. Interviews will be conducted over the phone by staff at Duke University. At the end of the study, we will have 3 PSC symptom measures for use in future PSC studies.
Have you been listed for kidney transplant at UNC? If so, you may be able to take part in a research study to help us learn how the process of waiting for a kidney transplant impacts you.
People with kidney disease that have the APOL1 risk variant are at a greater risk for developing protein in their urine and chronic kidney disease. This research study is being done to determine if the investigational drug, VX-147 can slow or stop the worsening of kidney function as well as target the underlying cause of kidney disease.
This study is trying to learn more about a medication called sparsentan, and how it can help the kidneys filter protein and slow the decline of kidney function. The amount of protein found in the urine (called proteinuria) is seen as a marker of kidney function. Lowering proteinuria levels is associated with better kidney health outcomes.
We still have a lot to learn about why people develop glomerular disease and what the best medicines are to treat these diseases. Diabetes is a common, chronic illness and many people with glomerular disease also have diabetes. Currently, there is no information telling us the best ways to treat patients with both diabetes and glomerular disease, or how to counsel them about prognosis and risks for complications. This substudy of the Cure Glomerulopathy Network brings together information and laboratory specimens from patients with diabetes and glomerular disease to speed up and improve health research for their care.
The purpose of this research project is to learn about whether a personalized eating plan designed specifically for teens with type 1 diabetes will help them better manage their blood sugar. This plan will be individualized to teens' unique preferences and daily routines. A dietician will provide ongoing support to the teen and family throughout the project
The CureGN Network acts as a "library" of data for investigators across the world to use to help us ask the following questions: 1) What is the disease?; 2) Why did it happen to me?; 3) Can it be passed down to my family members?; 4) What treatments work the best with the least side effects?
If you've had a kidney biopsy and learned you have a specific kidney condition, you might be eligible to join a three-year study. This study looks at how two medicines, when used together, might help treat your condition.
To evaluate the safety and efficacy of a device removing lipids from the blood using an apheresis device in treating primary FSGS
If you have been treated with ANCA vasculitis and you are now in remission, you may be able to participate in a study to test if a specific blood test can help your doctor decide if you need maintenance therapy.