Registry for patients with Alport syndrome
Alport Syndrome Foundation Alport Patient Registry
Alport Syndrome Foundation · NCT06526741
This study is creating a registry for people with Alport syndrome to share their health information, which will help researchers learn more about the condition and develop new treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 2500 (estimated) |
| Ages | 0 Years and up |
| Sex | All |
| Sponsor | Alport Syndrome Foundation (other) |
| Locations | 1 site (Scottsdale, Arizona) |
| Trial ID | NCT06526741 on ClinicalTrials.gov |
What this trial studies
The Alport Patient Registry, created by the Alport Syndrome Foundation in collaboration with Pulse Infoframe Inc., is an observational registry open to individuals diagnosed with Alport syndrome in the United States and its territories. Participants of all ages can join by providing a confirmed diagnosis through genetic testing, biopsy, or clinical assessment. The registry allows patients to report and update their health history, which is crucial for advancing research and informing future clinical trials aimed at developing therapies for Alport syndrome. The data collected will help in understanding the disease better and potentially lead to new treatment options.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals of any age with a confirmed diagnosis of Alport syndrome.
Not a fit: Patients without a confirmed diagnosis of Alport syndrome or those residing outside the USA and its territories may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could enhance research efforts and lead to the development of effective therapies for Alport syndrome.
How similar studies have performed: Other patient registries for genetic diseases have shown success in advancing research and treatment options, indicating a positive outlook for this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. Confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician or nephrologist. 2. Signed informed consent/assent must be provided by the subject and/or caregiver (parent/legal guardian) including compliance with the restrictions listed in the informed consent/assent form and in the study protocol. (Separate age-appropriate assent forms are provided for ages 7-12 years and ages 13-17 years.) 3. Must reside in the USA or US territories and outlying islands. (This criterium may change at an as-yet undetermined future date.) Exclusion Criteria: \[none\]
Where this trial is running
Scottsdale, Arizona
- On-line only: https://asfalportpatientregistry.healthie.net — Scottsdale, Arizona, United States (RECRUITING)
Study contacts
- Principal investigator: Makabe Aberle, BS — Alport Syndrome Foundation
- Study coordinator: Makabe Aberle, BS
- Email: kaberle@alportsyndrome.org
- Phone: 4808003510
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.
Conditions: Alport Syndrome, Thin Basement Membrane Disease, Hereditary Nephritis, Alport, COL4A3, COL4A4, COL4A5, Collagen Type-IV