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Alport Syndrome Research Studies

What is Alport Syndrome?

Alport syndrome is a rare inherited kidney disease that affects the tiny blood vessels in the kidneys, leading to kidney damage. It can also affect hearing and vision. The condition is caused by changes (mutations) in certain genes that provide instructions for making type IV collagen, an important protein in the kidney’s filtering units.

Alport Syndrome and the Kidneys

In Alport syndrome, the glomeruli—the kidney’s filtering units—do not form properly due to abnormal collagen. This makes them leak blood and protein into the urine. Over time, kidney function can decline, sometimes leading to kidney failure that requires dialysis or transplantation.

People with Alport syndrome may notice:

  • Blood in the urine (hematuria)
  • Protein in the urine (proteinuria)
  • Hearing loss
  • Vision changes (rare but possible)
  • Swelling in the legs, ankles, or around the eyes

Why Are We Studying Alport Syndrome?

There is currently no cure for Alport syndrome. Treatments focus on slowing disease progression and protecting kidney function, but they don’t always work for everyone. Researchers are studying new therapies that may:

  • Slow kidney function decline more effectively
  • Protect hearing and vision
  • Reduce protein loss in urine
  • Provide safer and more effective treatment options
  • Improve quality of life for people living with Alport syndrome

Our Alport Syndrome Research Program

Our team is conducting research focused on developing new approaches for treating Alport syndrome. These studies may provide access to promising treatments that are not yet widely available.

We partner with leading kidney specialists and research organizations to bring cutting-edge Alport syndrome studies to our community.

What Does Participation Mean?

If you join an Alport syndrome research study, you may receive:

  • Care from specialists experienced in treating Alport syndrome
  • Regular monitoring of your kidney function and hearing
  • Access to study medications (when applicable)
  • Close observation of your health and treatment response
  • Coordination with your current healthcare providers
  • Support from a dedicated research team

Could You Be Eligible?

Eligibility varies by study, but common factors we consider include:

  • Your age and overall health
  • Genetic confirmation of Alport syndrome
  • Your current kidney function and urine test results
  • Whether you have hearing or vision changes
  • What treatments you’ve tried in the past
  • Any medications you are currently taking

Your Safety and Comfort Come First

Your safety is our top priority. All studies are reviewed by independent ethics boards, and strict medical guidelines are followed. Throughout the study, your health will be monitored closely. Participation is entirely voluntary, and you may stop at any time.

Making a Difference

By joining an Alport syndrome research study, you are not only exploring potential treatments for yourself but also helping advance medical knowledge for others living with this rare condition. Your involvement may guide future therapies and improve outcomes worldwide.

Next Steps

Alport syndrome affects each person differently, and treatment needs vary. The best way to know if one of our current research studies is right for you is to speak with our research team.

We’ll answer your questions, explain the process, and help you decide without any pressure.

Ready to learn more? Contact our office at 208-984-2273 to talk with our research team about current opportunities for Alport syndrome research participation.

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