Alport Syndrome Treatments and Outcomes Registry (ASTOR)

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ClinicalTrials.gov Identifier: NCT00481130

Recruitment Status : Recruiting

First Posted : June 1, 2007

Last Update Posted : April 7, 2023

See Contacts and Locations

View this study on Beta.ClinicalTrials.gov

Sponsor:

Information provided by (Responsible Party):

University of Minnesota

Study Description

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.

Condition or disease
Alport Syndrome

Detailed Description:

The University of Minnesota's Department of Pediatrics has created the Alport Syndrome Treatments and Outcomes Registry (ASTOR). 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.

You can help doctors learn more about Alport syndrome and test possible treatments for the disease by enrolling in ASTOR. Since Alport syndrome is a rare disease it is essential for ASTOR to enroll as many patients as possible. Together, you and others facing the challenges of Alport syndrome can provide valuable information that will help doctors better understand the disease and in turn, help patients with Alport syndrome now and in the future.

Study Design

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Study Type :	Observational [Patient Registry]
Estimated Enrollment :	1000 participants
Observational Model:	Family-Based
Time Perspective:	Other
Target Follow-Up Duration:	15 Years
Official Title:	Alport Syndrome Treatments and Outcomes Registry
Study Start Date :	September 2007
Estimated Primary Completion Date :	January 2030
Estimated Study Completion Date :	January 2030

Resource links provided by the National Library of Medicine

MedlinePlus Genetics related topics: Alport syndrome

Genetic and Rare Diseases Information Center resources: Alport Syndrome

U.S. FDA Resources

Groups and Cohorts

Outcome Measures

Primary Outcome Measures :

Data Collection: natural history study [ Time Frame: Ongoing ]

Eligibility Criteria

Information from the National Library of Medicine

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Ages Eligible for Study:	0 Years to 99 Years (Child, Adult, Older Adult)
Sexes Eligible for Study:	All
Accepts Healthy Volunteers:	No
Sampling Method:	Non-Probability Sample

Study Population

Family and individual history of a diagnosis of Alport syndrome

Criteria

Inclusion Criteria: History of a diagnosis of Alport syndrome, Family or individuals need to be able to comprehend the consent and HIPAA forms written in the English language.

Exclusion Criteria: Uncertain diagnosis of Alport syndrome.

Contacts and Locations

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00481130

Contacts

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Contact: Sarah Lemmage	612-626-7632	lemmage@umn.edu
Contact: Sam Johnson	612-624-6135	joh11980@umn.edu

Locations

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United States, Minnesota
University of Minnesota	Recruiting
Minneapolis, Minnesota, United States, 55455
Principal Investigator: Clifford Kashtan, MD
Sub-Investigator: Michelle Rheault, MD

Sponsors and Collaborators

University of Minnesota

Investigators

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Principal Investigator:	Clifford Kashtan, MD	University of Minnesota, Department of Pediatrics

More Information

Additional Information:

Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):

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. Erratum In: Pediatr Nephrol. 2021 Jan 12;:

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Responsible Party:	University of Minnesota
ClinicalTrials.gov Identifier:	NCT00481130
Other Study ID Numbers:	0704M05941
First Posted:	June 1, 2007 Key Record Dates
Last Update Posted:	April 7, 2023
Last Verified:	April 2023

Keywords provided by University of Minnesota:


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:

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Nephritis, Hereditary Syndrome Disease Pathologic Processes Urogenital Abnormalities Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Urogenital Diseases	Nephritis Kidney Diseases Urologic Diseases Male Urogenital Diseases Congenital Abnormalities Collagen Diseases Connective Tissue Diseases

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