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Alport Syndrome Treatments and Outcomes Registry (ASTOR)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.
 
ClinicalTrials.gov Identifier: NCT00481130
Recruitment Status : Recruiting
First Posted : June 1, 2007
Last Update Posted : December 11, 2019
Sponsor:
Information provided by (Responsible Party):
University of Minnesota

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.

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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





Primary Outcome Measures :
  1. Data Collection: natural history study [ Time Frame: Ongoing ]


Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.


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Ages Eligible for Study:   up 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.


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
Additional Information:

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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: December 11, 2019
Last Verified: December 2019
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
Nephritis
Kidney Diseases
Urologic Diseases
Congenital Abnormalities
Collagen Diseases
Connective Tissue Diseases