Study of Individuals Affected With Hypoplasminogenemia
Recruiting now
Conditions studied: Plasminogen Deficiency
In brief
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
Key facts
- Study ID
- NCT03797495
- Run by
- Indiana Hemophilia &Thrombosis Center, Inc.
- People needed
- 100
- Starts
- 2018-12-18
- Expected to finish
- 2029-11-26
- Last updated by the study team
- 2026-06-04
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- Signed informed consent and assent as applicable (Appendix 1)
- A. Males or females with type 1 PD diagnosed locally with plasminogen activity levels <50% OR B. First degree family members of a person diagnosed with type 1 PD (includes parents, siblings, half-siblings)
- All ages included
- Available clinical history and treatment for at least 1 year prior to entry except for infants < 1 year of age
- Willingness to provide samples for analysis including DNA, plasma etc.
- Willingness to participate in prospective follow-up for up to 3 years
You may not qualify if…
- Previous organ transplant recipient
- Any psychiatric disorder, other mental disorder, or any other medical disorder that impairs the subject's ability to give informed consent or to comply with the requirements of the study protocol
- Refuses to provide informed consent
- Special patient populations, including prisoners or, are deemed medically or cognitively unsuitable for research by their treating physician
- Inability to obtain a blood sample due to poor or limited venous access
Where it is running
- Royal Free Hospital, Royal Free London NHS Foundation Trust — London, United Kingdom (enrolling)
- Rush University Medical Center — Chicago, Illinois, United States (enrolling)
- Indiana Hemophila @Thrombosis Center — Indianapolis, Indiana, United States (enrolling)
- University of Minnesota, Pediatric Hem/Onc & Cancer Survivorship Program — Minneapolis, Minnesota, United States (enrolling)
- Stony Brook University | Stony Brook Medicine — East Setauket, New York, United States (enrolling)
- SUNY Upstate Medical University, Pediatric Hematology/Oncology — Syracuse, New York, United States (enrolling)
- University of North Carolina at Chapel Hill — Raleigh, North Carolina, United States (enrolling)
- Wake Forest University — Winston-Salem, North Carolina, United States (enrolling)
- Hemophilia Center of Western Pennsylvania — Pittsburgh, Pennsylvania, United States (enrolling)
- Yuzuncu Yil University Faculty of Medicine Department of Ophthalmology — Van, Turkey (Türkiye) (enrolling)
- Cardiff and Vale UHB — Cardiff, Wales, United Kingdom (enrolling)
- Great Ormond Street Hospital for Children NHS Foundation Trust — London, United Kingdom (enrolling)
- The University of Alabama (UAB) — Birmingham, Alabama, United States (enrolling)
- Cook Children's Medical Center — Forth Worth, Texas, United States (enrolling)
- Seattle Children's Hospital — Seattle, Washington, United States (enrolling)
- Hospital Britanico Buenos Aires — Buenos Aires, Argentina (enrolling)
- Murdoch Children's Research Institute, The Royal Children's Hospital — Melbourne, Victoria, Australia (enrolling)
- Children's Health Queensland Hospital and Health Service — South Brisbane, Australia (enrolling)
- Medical University of Innsbruck, University Clinic for Pediatrics and Adolescent Medicine — Innsbruck, Austria (enrolling)
- Windsor Regional Hospital — Windsor, Ontario, Canada (enrolling)
- CHU Sainte-Justine — Montreal, Quebec, Canada (enrolling)
- CHU de Québec Université Laval — Québec, Quebec, Canada (enrolling)
- University of Saskatchewan — Saskatoon, Canada (enrolling)
- Alexandra Hospital, Athens, Hematology Department — Athens, Greece (enrolling)
- Safra's Children Hospital, Sheba Medical Center — Tel Aviv, Israel (enrolling)
Full record on ClinicalTrials.gov
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