Alport Syndrome Foundation Alport Patient Registry

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Observational
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
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• Confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician or nephrologist.

• 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.)

• Must reside in the USA or US territories and outlying islands. (This criterium may change at an as-yet undetermined future date.)

Locations
United States
Arizona
On-line only: https://asfalportpatientregistry.healthie.net
RECRUITING
Scottsdale
Contact Information
Primary
Benjamin A Weinstock, PhD
aweinstock@alportsyndrome.org
5155560699
Backup
Lisa Bonebrake
lbonebrake@alportsyndrome.org
6199873522
Time Frame
Start Date: 2023-08-24
Estimated Completion Date: 2048-08-23
Participants
Target number of participants: 2500
Treatments
Alport syndrome patients
Patients with a confirmed diagnosis of Alport syndrome by a certified genetic counselor, treating physician, or nephrologist.
Related Therapeutic Areas
Sponsors
Leads: Alport Syndrome Foundation
Collaborators: Pulse Infoframe Inc

This content was sourced from clinicaltrials.gov