RecruitingNCT03797495

Study of Individuals Affected With Hypoplasminogenemia

Hypoplasminogenemia: An International RetroSpecTive and PrOspective CohoRt StudY (HISTORY)

Sponsor

Indiana Hemophilia &Thrombosis Center, Inc.

Enrollment

100 participants

Start Date

Dec 18, 2018

Study Type

OBSERVATIONAL

Conditions

Plasminogen Deficiency

Summary

This is an Investigator initiated retrospective and prospective single cohort study. The study will utilize an international registry and develop a specimen biobank to provide an improved understanding of the natural history of hyposplasminogenemia, to elucidate the heterogeneity of phenotypic expression, identify markers to predict disease course, and inform improved therapeutic modalities

Eligibility

Plain Language Summary

Simplified for easier understanding

This study is building a large international registry to better understand hypoplasminogenemia (PLGD), a rare inherited condition where the body produces too little of a protein called plasminogen, which can cause abnormal tissue growths in areas like the eyes, ears, and sinuses. Researchers want to understand why symptoms vary so much between people with the same condition, identify factors that predict disease severity, and create a biobank of samples for future research. People of any age who have been diagnosed with PLGD (with plasminogen activity below 50%), or who are first-degree relatives of someone diagnosed, may be eligible. Participation involves sharing medical records, providing blood and other samples at baseline and follow-up visits, and telephone check-ins every 6 months over 3 years. This summary was generated with AI assistance to help patients understand the study in plain language.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Locations(30)

The University of Alabama (UAB)

Birmingham, Alabama, United States

Rush University Medical Center

Chicago, Illinois, United States

Indiana Hemophila @Thrombosis Center

Indianapolis, Indiana, United States

University of Minnesota, Pediatric Hem/Onc & Cancer Survivorship Program

Minneapolis, Minnesota, United States

Stony Brook University | Stony Brook Medicine

East Setauket, New York, United States

SUNY Upstate Medical University, Pediatric Hematology/Oncology

Syracuse, New York, United States

Wake Forest University

Winston-Salem, North Carolina, United States

Hemophilia Center of Western Pennsylvania

Pittsburgh, Pennsylvania, United States

Vanderbilt Children's Hematology-Oncology

Nashville, Tennessee, United States

Cook Children's Medical Center

Forth Worth, Texas, United States

The University of Texas Health Science Center at Houston

Houston, Texas, United States

Seattle Children's Hospital

Seattle, Washington, United States

Hospital Britanico Buenos Aires

Buenos Aires, Argentina

Murdoch Children's Research Institute, The Royal Children's Hospital

Melbourne, Victoria, Australia

Children's Health Queensland Hospital and Health Service

South Brisbane, Australia

Medical University of Innsbruck, University Clinic for Pediatrics and Adolescent Medicine

Innsbruck, Austria

Windsor Regional Hospital

Windsor, Ontario, Canada

CHU Sainte-Justine

Montreal, Quebec, Canada

CHU de Québec Université Laval

Québec, Quebec, Canada

University of Saskatchewan

Saskatoon, Canada

Alexandra Hospital, Athens, Hematology Department

Athens, Greece

Safra's Children Hospital, Sheba Medical Center

Tel Aviv, Israel

Angelo Bianchi Bonomi Hemophilia and Thrombosis Center,

Milan, Italy

University Hospital of Padova

Padua, Italy

Faculty of Medicine, Chiang Mai University

Chiang Mai, Thailand

Dokuz Eylul University pediatric Pulmonology, Allergy and Clinical Immunology

Izmir, Balçova, Turkey (Türkiye)

Istanbul Üniversitesi Onkoloji Enstitüsü

Istanbul, Turkey (Türkiye)

Istanbul University Cerrahpsasa, Cerrahpsasa Medical Faculty Pediatric Hematology and Oncology Department

Istanbul, Turkey (Türkiye)

Yuzuncu Yil University Faculty of Medicine Department of Ophthalmology

Van, Turkey (Türkiye)

Royal Free Hospital, Royal Free London NHS Foundation Trust

London, United Kingdom

View Full Details on ClinicalTrials.gov

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NCT03797495