Prevent Bleeding Disorder Complications in Hemophilia

Investigator: James Huang, MD
Sponsor: Children's Hospital of Orange County

Location(s): United States


Hemophilia is a complex disorder that can have chronic disease manifestations that are difficult and expensive to treat. Optimal care to prevent these complications requires a multi-disciplinary team approach. In the United States, hemophilia treatment centers (HTCs) have developed a model of care delivery called comprehensive care which includes specialized prevention, diagnostic, and treatment programs designed to provide family-centered education, state-of-the-art treatment, research, and support services for individuals and families living with bleeding disorders.

The purpose of this program is to:

  • prevent complications of hemophilia through assessment, surveillance, outreach, education, consultation, and management;
  • provide a regional network of comprehensive prevention services through hemophilia treatment centers to persons with hemophilia and related disorders including women with bleeding disorders;
  • maintain a prevention evaluation network to assess the efficacy of these prevention services;
  • participate in blood safety monitoring and surveillance efforts;
  • collaborate with lay organizations to deliver consistent prevention messages aimed at preventing complications and improving health across the lifespan;
  • propose research topics to utilize the Universal Data Collection (UDC) project to enhance program impact.