COMPLETED

Alport Syndrome Treatments and Outcomes Registry

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Conditions

Alport Syndromex linkedautosomal dominant Alport syndromeglomerular basement membranehereditary nephritisfamilial benign haematuriatype IV collagenhereditary nephritis with neurosensory deafnessvison loss

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

ASTOR's primary purpose is to enroll families and patients with a history of Alport syndrome in a central registry. The information we gather will be used as a basis for studies designed to test potential treatments for Alport syndrome. ASTOR also aims to provide patients, families and physicians with the most up-to-date information about Alport syndrome.

Official Title

Alport Syndrome Treatments and Outcomes Registry

Quick Facts

Study Start:2007-09
Study Completion:2025-11-17
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:COMPLETED

Study ID

NCT00481130

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:0 Years to 99 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Principal Investigator

Clifford Kashtan, MD
PRINCIPAL_INVESTIGATOR
University of Minnesota, Department of Pediatrics

Study Locations (Sites)

University of Minnesota
Minneapolis, Minnesota, 55455
United States

Collaborators and Investigators

Sponsor: University of Minnesota

  • Clifford Kashtan, MD, PRINCIPAL_INVESTIGATOR, University of Minnesota, Department of Pediatrics

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2007-09
Study Completion Date2025-11-17

Study Record Updates

Study Start Date2007-09
Study Completion Date2025-11-17

Terms related to this study

Keywords Provided by Researchers

  • Alport Syndrome
  • x linked
  • autosomal dominant Alport syndrome
  • glomerular basement membrane
  • hereditary nephritis
  • familial benign haematuria
  • type IV collagen
  • hereditary nephritis with neurosensory deafness
  • vison loss

Additional Relevant MeSH Terms

  • Alport Syndrome