Registry for families and patients with Alport syndrome
Alport Syndrome Treatments and Outcomes Registry
This study is setting up a registry to collect information from families and patients with Alport syndrome to help improve understanding and future treatments for the condition.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Ages | 0 Years to 99 Years |
| Sex | All |
| Sponsor | University of Minnesota Academic / other |
| Locations | 1 site (Minneapolis, Minnesota) |
| Trial ID | NCT00481130 on ClinicalTrials.gov |
What this trial studies
The Alport Syndrome Treatments and Outcomes Registry (ASTOR) is designed to enroll families and patients with a history of Alport syndrome into a central registry. This observational study aims to gather comprehensive data that will serve as a foundation for future research on potential treatments for Alport syndrome. Additionally, ASTOR seeks to provide updated information to patients, families, and healthcare providers about the condition. By enrolling a diverse group of participants, the registry aims to enhance understanding of Alport syndrome and improve patient outcomes.
Who should consider this trial
Good fit: Ideal candidates include individuals or families with a confirmed diagnosis of Alport syndrome who can understand the consent and HIPAA forms in English.
Not a fit: Patients with an uncertain diagnosis of Alport syndrome may not receive any benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to better treatment options and improved management strategies for patients with Alport syndrome.
How similar studies have performed: While this registry approach is common in rare diseases, the specific focus on Alport syndrome may provide novel insights and has not been extensively tested in this context.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: History of a diagnosis of Alport syndrome, Family or individuals need to be able to comprehend the consent and HIPAA forms written in the English language. Exclusion Criteria: Uncertain diagnosis of Alport syndrome.
Where this trial is running
Minneapolis, Minnesota
- University of Minnesota — Minneapolis, Minnesota, United States (Recruiting)
Study contacts
- Principal investigator: Clifford Kashtan, MD — University of Minnesota, Department of Pediatrics
- Study coordinator: Anael Kuperwajs Cohen
- Email: kuper029@umn.edu
- Phone: 612-626-7632
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.