Data Collection for Alport Syndrome
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to gather crucial information from individuals diagnosed with Alport syndrome, a genetic condition affecting kidney function, hearing, and vision. Participants contribute valuable data that can drive research and potentially lead to new treatments or a cure for this condition. To join, participants need a confirmed Alport syndrome diagnosis, established through genetic testing, a biopsy, or a doctor's assessment of symptoms and family history. The trial is open to anyone in the US or its territories with this diagnosis, regardless of the stage of their condition. Participants will report their health history online, and privacy remains a top priority, with personal details kept confidential. As a Phase 3 trial, this study represents the final step before FDA approval, offering participants a chance to contribute to a potentially groundbreaking treatment.
Do I need to stop my current medications to join the trial?
The trial information does not specify whether you need to stop taking your current medications. It seems to focus on data collection rather than treatment changes.
Why are researchers excited about this trial?
Researchers are excited about the ASF Alport Patient Registry because it aims to gather comprehensive data on individuals with Alport syndrome, a genetic condition that affects kidney function. Unlike current treatment options like ACE inhibitors or ARBs, which manage symptoms, this registry could lead to a better understanding of the disease's progression and response to various treatments. By compiling detailed patient information, the registry may pave the way for more targeted therapies and personalized treatment plans in the future.
Who Is on the Research Team?
Benjamin A Weinstock, PhD
Principal Investigator
Alport Syndrome Foundation
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Registry Participation
Participants report their own health history in the Registry and update any changes every three months
Follow-up
Participants are monitored for safety and effectiveness after treatment
What Are the Treatments Tested in This Trial?
Interventions
- ASF Alport Patient Registry
How Is the Trial Designed?
1
Treatment groups
Experimental Treatment
Patients with a confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician, or nephrologist.
Find a Clinic Near You
Who Is Running the Clinical Trial?
Alport Syndrome Foundation
Lead Sponsor
Pulse Infoframe Inc
Collaborator
Pulse Infoframe Inc
Industry Sponsor
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