Clinical Studies | Comprehensive Hemophilia Treatment Center

We offer participation in collaborative observational research studies, where through partnering with public health organizations and the network of HTC’s led by the American Thrombosis and Hemostasis Network (ATHN) we can improve patient care and outcomes.

Disclosure in the Hemophilia Population: Factors influencing Disclosure and the Effect on Interpersonal Relationships

Catherine McGuinn, M.D.

The goal of this study is to understand how disclosure of a chronic illness affects the interpersonal relationships of individuals with hemophilia and other congenital bleeding disorders, as well as which factors influence their decision to disclose. Adults 18 and over with a congenital bleeding disorder will be asked to complete an online, de-identified questionnaire designed to answer these questions.

Study Details

The Implementation, User Testing and Validation of the Web-based Application for the Population Pharmacokinetic Service: Hemophilia (WAPPS-HEMO) Phase 2

Catherine McGuinn, M.D.

The WAPPS-Hemo project is a centralized, dedicated, web-accessible, actively moderated database that allows participating hemophilia centres to securely input factor VIII/IX plasma levels from sparse samples of their patients, returning individual pharmacokinetic estimates (PK). These estimates are generated by a proprietary automated population PK engine and manually validated.

The specific aims of the service are to:

Empower hemophilia treatment by facilitating individual...

Study Details

Prospective Data Collection on Patients with Coagulation Factors Deficiency (PRO-RBDD)

Catherine McGuinn, M.D.

PRO-RBDD is an international collaborating network that has developed a web database designed to prospectively collect clinical and laboratory data of patients with coagulation factor deficiencies in order to evaluate prevalence, bleeding frequency and management, as well as consumption of treatment products and related complications. Current studies are analyzing fibrinogen and factor XIII deficiencies.

IRB: 1308014241

Study Details

My Life Our Future: A Hemophilia Genotyping Initiative Data and Sample Research Repository

Catherine McGuinn, M.D.

My Life, Our Future (MLOF) is a nationwide program created to provide genetic testing at no cost to patients with Hemophilia A and Hemophilia B and build a data and blood sample repository, which researchers will be able to use to better understand hemophilia A and B, and other medical conditions. The project is a partnership between ATHN, Bloodworks Northwest, the National Hemophilia Foundation, and Bioverativ (formerly Biogen Hemophilia).

IRB: 1311014564

Study Details

Community Counts : CDC Public Health Surveillance for Bleeding Disorders

Catherine McGuinn, M.D.

Community Counts is a public health monitoring program funded by CDC’s Division of Blood Disorders. The purpose of this project is to gather and share information about common health issues, medical complications, and causes of death that affect people with bleeding disorders cared for in U.S. Hemophilia Treatment Centers (HTCs). Community Counts aims to continue the work of the Universal Data Collection System, which ended in 2011.

Community Counts is led by the Division of Blood...

Study Details