Frequently Asked Questions

Nephrotic Syndrome is not a disease itself, but rather a group of signs and symptoms that result from damage in the part of the kidney that filters blood (glomeruli).

Common symptoms include:

  • Foamy urine (called proteinuria) caused by protein “spilling” into the urine
  • Severe swelling in parts of the body, most noticeably around the eyes, hands, feet, and abdomen (called edema)
  • Weight gain due to a buildup of extra fluid
  • Fatigue
  • Loss of appetite
  • Low levels of protein in the blood (hypoalbuminemia)
  • Higher than normal fat and cholesterol levels in the blood (hyperlipidemia)

Nephrotic Syndrome can typically be diagnosed with a urine test.

Nephrotic Syndrome can be “primary” or “secondary” in nature.

Diseases that affect only the kidneys are called primary causes of Nephrotic Syndrome. Doctors often call these diseases “idiopathic,” which means that they arise from an unknown cause. Some of these diseases include:

  • Minimal Change Disease (MCD) – most common in children
  • Focal Segmental Glomerulosclerosis (FSGS)
  • Membranous Nephropathy (MN) – most common in adults
  • IgA Nephropathy (IgAN)

Secondary Nephrotic Syndrome is caused by an underlying, systemic condition like diabetes, lupus, HIV, and others.

The Kidney Health Gateway is a website owned and operated by NephCure Kidney International. The purpose of this website is to help patients with rare forms of primary Nephrotic Syndrome get connected to expert care and cutting-edge treatment options. By answering a few questions about you or your loved one’s condition, we can provide you with a list of clinical trials and/or expert doctors in your area.

If you have additional questions, please visit NephCure.org or email Info@NephCure.org.

 

Clinical studies are any studies that involve people. There are two main types: observational and interventional. In an observational trial, researchers track health outcomes over time in groups of participants to look for patterns that help us better understand a disease. In an interventional trial, participants receive specific interventions, which can include new treatments or behavorial changes (e.g., diet changes). To learn more about clinical research, please visit the NephCure website.

By participating in a clinical trial, you not only gain access to cutting-edge & expert care, but you are participating in a potential medical breakthrough that could help many more people in the future. During treatment, you will be monitored closely by top physicians and researchers. Should the medical treatment being tested in the clinical trial be effective, you will be one of the first people to reap the benefits before it is released to the public.

While participating in clinical trials, the biggest commitment is your time. Balancing routine clinical checkups, going to regularly scheduled physician appointments, and following the study protocol are commitments you may have during a clinical trial. Clear communication between physicians and patients is extremely important throughout the clinical trial,  as is commitment to the treatment schedule.

Remember, each clinical trial is different and will have different commitments. Ask about what is involved in the trial at your first appointment to better understand what the commitment is.

Also, you may stop participating at any time during a clinical trial with no questions asked.

No! Your current doctor will work closely with the study team to monitor your health. When the study is completed, you can go back to seeing your current doctor and ONLY your current doctor if that is what you choose.

 

If there is not a site for a clinical trial nearby, you can ask the study team about the possibility of travel reimbursements (paying you back for your travel). Alternatively, you can ask the study team about the possibility of remote participation.

If it is not possible for you to get to study site, there are still many research studies that you can participate in from home. Look for studies that say “Worldwide Participation” on your list and talk to the team about how you can help.

 

Patients that are participating in a clinical trial are under constant care by expert doctors and researchers who make the health and safety of the patient their priority. Constant communication and regular check-ins between the patient and the researcher are highly encouraged. If you do not feel well at any point during the trial, talk to the research team and your physician immediately to decide what the best next steps are.

 

After the study is completed, the data is then collected, analyzed, and shared with experts and several government agencies for the drug approval process.

Participants can continue to take the medication, should it help, but they are not required to continue with any other phases of the trials. Each clinical trial has a different set of rules about what happens after the trial is over, so be sure to talk to your research team.

 

Still have questions?