Mary M. Gooley Hemophilia Center

Caring is in our blood

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You are here: Home > Our Care Model > Research

Research

tube-of-blood-in-handFor many years the Center has been actively involved in clinical research studies to help cultivate advances in the medical conditions that we treat. If a patient is interested in being involved in a research study at the Center, they would discuss with the doctors and nurses involved what the study is about and what the expectations of them would be. Typically, research activities and patient care are integrated. It is important that patients derive benefit from their participation in research at the Center. To learn more about opportunities to become involved in research, please ask any staff member at the Center. A partial list of studies currently underway at the Hemophilia Center includes the following:

  • Hemophilia Studies
  • von Willebrand Studies
  • Hemochromatosis Studies

Hemophilia Studies


Hemophilia Study – IRB#: 2056-B Kouides

Title: ATHN 11 – Observational Cohort Study – Liver Transplantation Outcomes Study

Description: To examine the impact of sustained increase in Factor VIII and Factor IX levels after liver transplantation on quality of life (QoL) as measured by pain, health outcomes, work, activity, and mental and physical health in adults with Hemophilia A and B.


Hemophilia Study – IRB#: 2071-A Kouides

Title: Age and Hemophilia Carrier Phenotype Study – Elucidating the age-dependent variation of clinical and laboratory phenotype of hemophilia carriers along with prescription trends of hemostatic therapies – Analysis of the American Thrombosis and Hemostasis Network (ATHN) dataset

Description:  Characterize the phenotypic variability of female symptomatic and asymptomatic carriers of hemophilia across the entire age-spectrum, womb to tomb


Hemophilia Study – IRB#: 2032-B Kouides

Title:  ATHN 10 – Leveraging the ATHNdataset to Document the State of Rare Coagulation Disorders in the United States

Description: The goal of this project is to enhance the genotypic and phenotypic data on the population of rare coagulation disorder patients receiving care within the ATHN-affiliated network.

https://athn.org/what-we-do/national-projects/athn10.html

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Von Willebrand Studies


vWD Study – IRB#: 1958-A  Kouides

Title: ATHN 9 – A Natural History Cohort Study of the Safety, Effectiveness, and Practice of Treatment of People with Severe von Willebrand Disease

Description: To assess the safety of various von Willebrand Factor (VWF) regimens for different indications (on-demand, surgery and prophylaxis) in adult and pediatric participants with clinically severe congenital VWD.


vWD Study – IRB#: 1911-B-19  Kouides

Title: ATHENA1 – Characterizing the impact and treatment of reproductive tract bleeding in women and post-menarchal girls with bleeding disorders

Description: Characterize reproductive tract bleeding in a cohort of women/girls with bleeding disorders cared for at US HTCs.  Characterize the treatment strategies for and the impact of heavy menstrual bleeding in a cohort of females with bleeding disorders cared for at HTCs.


vWD Study – IRB #: 1732-A-17 Kouides

Title: Genotype and Phenotype Analysis of Adolescents with Heavy Menstrual Bleeding and Low von Willebrand Activity

Description: Study the genotype of adolescent females with heavy menstrual bleeding and low vWF activity.


vWD Study – IRB#: 1807-B-18 Kouides

Title:  Pregnancy Loss in von Willebrand Disease:  A Multi-Centre Cohort Study

Description: Determine the rate of pregnancy loss in women with VWD, compared to a non-bleeding disorder


vWD Study – IRB #: 2084-B Kouides

Title: The von Willebrand Disease Aging and Bleeding Correlation (VWD ABC) Study

Description: Determine if age in patients with type 1 VWD is associated with increased VWF antigen levels and lower VWD bleeding scores

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Hemochromatosis Studies


microscope-closeupHemochromatosis Studies – IRB #: 1331-A-11-1 Phatak R24 Grant

Title: Genetic Modifiers of Iron status in Hemochromatosis HFE C28ZY Homozygotes

Description: To determine the genetic and other factors that may influence iron absorbtion and account for some of this variation among those already known to be homozygous (2copies) for the C282Y HFE mutation.


Hemochromatosis Studies – IRB #: 1081-A-08-1 Phatak

Title: The Role of Hepcidin and Hemojuvelin in Iron Regulation (UCLA Study)

Description: To evaluate familie with non-HFE hemochromatosis to determine how to recently discovered proteins, hepcidin and hemojuvelin, play a role in iron metabolism.


Hemochromatosis Studies – IRB #: 749-B-03-1 Phatak

Title: Genotypic and Environmental Determinates of Penetrance in Hereditary Hemochromatosis

Description: To explore dietary and genetic factors that may modulate iron absorption rates and thereby influence penetrance in these subjects.

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In This Section

  • About Us
    • The Center Today
    • Our History
    • Our Team
    • Board of Directors
  • What
    We Treat
    • Hemophilia
    • von Willebrand Disease
    • Rare Bleeding Disorders
    • Hemochromatosis/Iron Overload
    • Gaucher Disease
  • Our Care
    Model
    • Comprehensive Care Treatment
    • Research
  • Pharmacy
    Program
    • Pharmacy – Patients
    • Pharmacy – Payers
  • Programs &
    Services
    • Support & Education
    • Helpful Resources
    • Patient Assistance Programs
    • Insurance Counseling
    • Camps for Kids
    • Scholarship Opportunities
  • Event
    Calendar
  • Advocacy

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