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Study of Individuals Affected With Hypoplasminogenemia
Hypoplasminogenemia: An International RetroSpecTive and PrOspective CohoRt StudY (HISTORY)
Who can join
All ages · All sexes
Full eligibility criteria
Inclusion Criteria: 1. Signed informed consent and assent as applicable (Appendix 1) 2. 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) 3. All ages included 4. Available clinical history and treatment for at least 1 year prior to entry except for infants \< 1 year of age 5. Willingness to provide samples for analysis including DNA, plasma etc. 6. Willingness to participate in prospective follow-up for up to 3 years Exclusion Criteria: 1. Previous organ transplant recipient 2. 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 3. Refuses to provide informed consent 4. Special patient populations, including prisoners or, are deemed medically or cognitively unsuitable for research by their treating physician 5. Inability to obtain a blood sample due to poor or limited venous access
About the study
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
Sponsor: Indiana Hemophilia &Thrombosis Center, Inc. · Participants: 100 · Started: Dec 18, 2018
Contact the study team
- Amy D Shapiro, MD · Phone: 317-871-0000
- Charles Nakar, MD · Phone: 317-871-0000
Official record on ClinicalTrials.gov — NCT03797495
Locations in the U.S.
From ClinicalTrials.gov, data retrieved Oct 2, 2026. Each study sets its own eligibility; the study team decides who can join.