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Scientists launch global effort to unlock mysteries of rare blood disorder

NCT ID NCT03797495

Knowledge-focused Sponsor: Indiana Hemophilia &Thrombosis Center, Inc. Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is for people with plasminogen deficiency (a rare blood disorder) and their close family members. Researchers will collect medical history and blood samples over several years to better understand how the disease develops and varies between people. No new treatments are being tested—the goal is to gather information to improve future care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 100 people

The number the study aims to enrol. It can still change while the study runs.

Started

Dec 2018

Expected to finish

Nov 2029

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Study population will include males and females affected with hyposplasminogenemia of any age and their first degree family members (siblings and parents).

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

hypoplasminogenemia

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Plasminogen deficiency

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    31 sites in 11 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Alexandra Hospital, Athens, Hematology Department

    RECRUITING

    Athens, 11528, Greece

  • Angelo Bianchi Bonomi Hemophilia and Thrombosis Center,

    RECRUITING

    Milan, 20122, Italy

  • CHU Sainte-Justine

    RECRUITING

    Montreal, Quebec, H3T 1C5, Canada

  • CHU de Québec Université Laval

    RECRUITING

    Québec, Quebec, A0121, Canada

  • Cardiff and Vale UHB

    RECRUITING

    Cardiff, Wales, CF14 4XW, United Kingdom

  • Children's Health Queensland Hospital and Health Service

    RECRUITING

    South Brisbane, QLD 4101, Australia

  • Cook Children's Medical Center

    RECRUITING

    Forth Worth, Texas, 76104, United States

  • Dokuz Eylul University pediatric Pulmonology, Allergy and Clinical Immunology

    ACTIVE_NOT_RECRUITING

    Izmir, Balçova, 35330, Turkey (Türkiye)

  • Faculty of Medicine, Chiang Mai University

    RECRUITING

    Chiang Mai, 50200, Thailand

  • Great Ormond Street Hospital for Children NHS Foundation Trust

    RECRUITING

    London, WC1N 3HR, United Kingdom

  • Hemophilia Center of Western Pennsylvania

    RECRUITING

    Pittsburgh, Pennsylvania, 15213, United States

  • Hospital Britanico Buenos Aires

    RECRUITING

    Buenos Aires, C1280, Argentina

  • Indiana Hemophila @Thrombosis Center

    RECRUITING

    Indianapolis, Indiana, 46260, United States

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

    ACTIVE_NOT_RECRUITING

    Istanbul, 34098, Turkey (Türkiye)

  • Istanbul Üniversitesi Onkoloji Enstitüsü

    RECRUITING

    Istanbul, 34093, Turkey (Türkiye)

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

    RECRUITING

    Innsbruck, A-6020, Austria

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

    RECRUITING

    Melbourne, Victoria, 3052, Australia

  • Ondokuz Mayıs Üniversitesi Tıp Fakültesi Pediatrik Hematoloji Bölümü

    RECRUITING

    Samsun, Samsun, 55200, Turkey (Türkiye)

  • Royal Free Hospital, Royal Free London NHS Foundation Trust

    RECRUITING

    London, United Kingdom

  • Rush University Medical Center

    RECRUITING

    Chicago, Illinois, 60612, United States

  • SUNY Upstate Medical University, Pediatric Hematology/Oncology

    RECRUITING

    Syracuse, New York, 13210, United States

  • Safra's Children Hospital, Sheba Medical Center

    RECRUITING

    Tel Aviv, Israel

  • Seattle Children's Hospital

    RECRUITING

    Seattle, Washington, 98105-3901, United States

  • Stony Brook University | Stony Brook Medicine

    RECRUITING

    East Setauket, New York, 11733, United States

  • The University of Alabama (UAB)

    RECRUITING

    Birmingham, Alabama, 35233, United States

  • The University of Texas Health Science Center at Houston

    COMPLETED

    Houston, Texas, 77030, United States

  • Uludag University, Medical Faculty Sebahattin Gazioğlu, Pediatric Hematology and Oncology Hospital

    RECRUITING

    Bursa, Bursa, 16059, Turkey (Türkiye)

  • University Hospital of Padova

    RECRUITING

    Padua, 35100, Italy

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

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

  • University of North Carolina at Chapel Hill

    RECRUITING

    Raleigh, North Carolina, 27599, United States

  • University of Saskatchewan

    RECRUITING

    Saskatoon, SK S7N 0W8, Canada

  • Vanderbilt Children's Hematology-Oncology

    COMPLETED

    Nashville, Tennessee, 37232, United States

  • Wake Forest University

    RECRUITING

    Winston-Salem, North Carolina, 27157, United States

  • Windsor Regional Hospital

    RECRUITING

    Windsor, Ontario, N8W 1L9, Canada

  • Yuzuncu Yil University Faculty of Medicine Department of Ophthalmology

    RECRUITING

    Van, 65040, Turkey (Türkiye)