Hemostasis and Thrombosis Research: For Patients

OHSU’s Dr. Marie Martinelli talks with a young person in an exam room.
Marie Martinelli is a pediatric hematologist-oncologist who sees patients with inherited bleeding and clotting disorders. She has studied ways to treat and prevent blood clots in young children.

At the Hemostasis and Thrombosis Center, we research ways to better care for patients.

You can help advance health care by taking part in our research. If you join a study, you can:

  • Learn more about a disease or condition.
  • Help find new ways to prevent or treat disease.
  • Improve health and quality of life for current and future generations.

We may ask you to join a study. Joining is always up to you, and you can always change your mind and quit a study, even if you decide to enroll. Either way, you can expect our best care for bleeding and clotting disorders.

Research that includes OHSU

Clinical trials

These studies test a treatment or approach on people. Clinical trials are often designed and paid for by a drug maker or health care industry group. The goal is often to see if a drug or device works, in hopes of gaining U.S. Food and Drug Administration approval. After FDA approval, the drug can be prescribed by a doctor.

Hemophilia gene therapy: We have taken part in studies since 2011. They have led to FDA approval of two gene therapy treatments for adults:

  • Hemgenix in 2022
  • Roctavian in 2023

Both are one-time treatments clinically available at OHSU. They can reduce the need for prophylaxis, a medication given by IV or shot.

Look for a clinical trial at OHSU.

Researcher-led studies

These may be:

  • Observational: The study may survey patients about their symptoms or care. It may look at patients’ quality of life. It may consist of detailed reports on patients and their symptoms, treatment and results.
  • Interventional: The study may test a new drug or compare two types of treatment.

Our researchers have led studies on:

  • Platelet disorders
  • Clotting factors and heavy menstrual bleeding
  • Yoga for people with bleeding disorders who have chronic pain
  • Risk of falling for people with hemophilia
  • Physical activity in children and teens with bleeding disorders
  • How patients cope with bleeding disorders

Learn how OHSU hematologist Bethany Samuelson Bannow is helping advance knowledge of menstruation and bleeding disorders.

Collaborative studies

Experts from different places work together, opening the study to more people from a wider area. These studies are usually funded by grants.

Our researchers have taken part in studies on:

  • Medications that prevent blood clots during pregnancy
  • Safe and effective treatments for people with hemophilia
  • Treating and preventing blood clots in young children
  • Von Willebrand factor and pregnancy

Community Counts

We take part in the Community Counts project to collect health data from people with bleeding disorders. It’s funded by the Centers for Disease Control and Prevention.

This project also tracks the safety of blood products.

Contact us

To learn more or ask questions about our research:

Locations

Doernbecher Children’s Hospital, seventh floor
700 S.W. Campus Drive
Portland, OR 97239

OHSU Hemophilia Pharmacy
707 S.W. Gaines St.
Portland, OR 97239

Free parking for patients and visitors