NCT00481130

Brief Summary

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.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
655

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Sep 2007

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

May 30, 2007

Completed
2 days until next milestone

First Posted

Study publicly available on registry

June 1, 2007

Completed
3 months until next milestone

Study Start

First participant enrolled

September 1, 2007

Completed
18.2 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

November 17, 2025

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

November 17, 2025

Completed
Last Updated

November 25, 2025

Status Verified

November 1, 2025

Enrollment Period

18.2 years

First QC Date

May 30, 2007

Last Update Submit

November 21, 2025

Conditions

Alport Syndrome

Keywords

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

Outcome Measures

Primary Outcomes (1)

  • Data Collection: natural history study

    Ongoing

Eligibility Criteria

Age0 Years - 99 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Family and individual history of a diagnosis of Alport syndrome

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Minnesota

Minneapolis, Minnesota, 55455, United States

Location

Related Publications (1)

  • Kashtan CE, Gross O. Clinical practice recommendations for the diagnosis and management of Alport syndrome in children, adolescents, and young adults-an update for 2020. Pediatr Nephrol. 2021 Mar;36(3):711-719. doi: 10.1007/s00467-020-04819-6. Epub 2020 Nov 6.

    PMID: 33159213DERIVED

MeSH Terms

Conditions

Nephritis, HereditaryAlport syndrome, dominant type

Condition Hierarchy (Ancestors)

Urogenital AbnormalitiesFemale Urogenital DiseasesFemale Urogenital Diseases and Pregnancy ComplicationsUrogenital DiseasesNephritisKidney DiseasesUrologic DiseasesMale Urogenital DiseasesCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesCollagen DiseasesConnective Tissue DiseasesSkin and Connective Tissue Diseases

Study Officials

  • Clifford Kashtan, MD

    University of Minnesota, Department of Pediatrics

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
FAMILY BASED
Time Perspective
OTHER
Target Duration
15 Years
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

May 30, 2007

First Posted

June 1, 2007

Study Start

September 1, 2007

Primary Completion

November 17, 2025

Study Completion

November 17, 2025

Last Updated

November 25, 2025

Record last verified: 2025-11

Locations

US(1)