| NCT ID | NCT06526741 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Alport Syndrome Foundation |
| Condition | Alport Syndrome |
| Study Type | OBSERVATIONAL |
| Enrollment | 2,500 participants |
| Start Date | 2023-08-24 |
| Primary Completion | 2048-08-23 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 2,500 participants in total. It began in 2023-08-24 with a primary completion date of 2048-08-23.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
Alport Syndrome Foundation's (ASF's) Alport Patient Registry (the Registry) is open to individuals living with Alport syndrome in the United States (US) and US territories and outlying islands. The Registry welcomes participants of all ages who have a confirmed clinical diagnosis of Alport syndrome. A confirmed diagnosis could be obtained via genetic testing, biopsy, and/or from a medical professional's clinical assessment of the individual's symptoms and/or family history. Participants can have any form and stage of this disease to be eligible for inclusion in the Registry. Patient participation in the Registry is crucial to helping attract and advance research, understanding understudied aspects of the disease, and informing clinical trials that may lead to Alport syndrome therapies and/or a cure. The Registry is accessed through a secure, online application. Participants report their own health history in the Registry and are encouraged to update any changes, at most, every three months. The security of each participant's information is a top priority. Any detail that could identify an individual participant is kept confidential in the Registry and such data are de-identified to protect the participant's privacy. No electronic health records or social security numbers are requested by or connected to the Registry. A parent or legal guardian may consent to enroll a child/dren Alport patient(s) under the age of 18 years. An additional assent form is used for individuals ages 7-17. At age 18, participants will be required to re-consent as an adult if they choose to continue to participate in the Registry.
Eligibility 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: \[none\]
Contact & Investigator
Makabe Aberle, BS
PRINCIPAL INVESTIGATOR
Alport Syndrome Foundation
Frequently Asked Questions
Who can join the NCT06526741 clinical trial?
This trial is open to participants of all sexes, aged 0 Years or older, studying Alport Syndrome. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT06526741 currently recruiting?
Yes, NCT06526741 is actively recruiting participants. Contact the research team at kaberle@alportsyndrome.org for enrollment information.
Where is the NCT06526741 trial being conducted?
This trial is being conducted at Scottsdale, United States.
Who is sponsoring the NCT06526741 clinical trial?
NCT06526741 is sponsored by Alport Syndrome Foundation. The principal investigator is Makabe Aberle, BS at Alport Syndrome Foundation. The trial plans to enroll 2,500 participants.