Hemophilia Treatment Centers
National Network of Centers
The concept of comprehensive care is to treat the whole person and the family, through continuous supervision of all the medical and psychosocial aspects of bleeding disorders. Comprehensive care is total care because every facet of the person is addressed, including their physical, emotional, psychological, educational, financial and vocational factors.
The development of comprehensive care over the past 30 years has greatly improved the quality of life for people with bleeding disorders as well as helping to increase the life expectancy from an average of just 20 years in 1960 to close to the national average today of 76 years. The treatment center care network has also improved patient’s overall health. Studies have shown that the comprehensive model of care provided at HTCs can reduce the overall healthcare costs of their patients by 74%. Moreover, care in the HTC network has been shown to reduce morbidity and mortality.
Individuals who go to HTCs will not only find state-of-the art medical care, but also benefit from an experienced, caring staff that takes time to develop comprehensive treatment care plans for patients and families. Hematologists, nurses, social workers, psychosocial professionals and physical therapists not only help consumers with their medical care issues, but also lend tremendous emotional support. The treatment center not only provides specialty care but can also act as a resource to the patient’s regular family physician or dentist.
Did you know ...
In 1973, the National Hemophilia Foundation (now the National Bleeding Disorders Foundation) launched a two-year campaign to establish the creation of a nationwide network of hemophilia diagnostic and treatment centers. The goal was to provide a range of comprehensive services for patients and families within one treatment facility. Today, there are about 141 federally funded treatment centers and programs across the country.
Children’s National Medical Center
Department of Hematology/Oncology
111 Michigan Avenue, NW
Washington, DC 20010
Northern Virginia Clinic: Pediatric Specialists of Virginia, Inova Schar Cancer Institute, 8081 Innovation Park Drive, Building B, Suite 765, Fairfax, VA 22031. Phone: (571) 472-1717
Rockville Clinic: 9851 Key West Avenue, Rockville, MD 20850. Phone: (301) 765-5400 or (800) 787-0243
The Hemophilia Treatment Center (HTC) at Children’s National Health System (CNHS) was among the first federally funded pediatric centers. The need for comprehensive care for hemophilia was conceptualized by Dr. Sanford Leiken, former Chief of Pediatric Hematology and Oncology, and implemented through the NIH’s Maternal and Child Health Bureau.
Children’s HTC staff is involved in the search for safer blood and blood products, offered to our patients through clinical research protocols.
What Children’s HTC Offers:
- A multi-disciplinary team integrating medical, psychosocial and subspecialty care in a family centered environment with a special emphasis on the pediatric patient.
- Annual comprehensive evaluation. Comprehensive care enables your child to be evaluated by the entire Comprehensive Care Team, which includes hematologists, nurses, nurse practitioners, physical therapist, social worker, and additional specialty services including genetic counselor, dentists, orthopedic surgeons and other services as needed.
- Comprehensive care also means physicians and fellows are available 24 hours a day, seven days a week.
- Integration of the family into clinical decision-making.
- A series of different clinical trial options, particularly for previously untreated patients.
- New parent teaching and home/self-infusion training sessions for parents and patients.
- Full service on-site laboratory with specialized coagulation labs to diagnose hemophilia identify inhibitors and other complex bleeding disorders.
- Accessibility in the community at outpatient facilities in Rockville, Maryland, and Northern Virginia.
- Educational programs and networking opportunities for families.
- Coordinated care for surgical or complex medical issues.
- State of the art emergency room facilities.
HTC Team at Children’s
Medstar Georgetown University Center for Hemophilia and Thrombophilic Disorders
Georgetown University Hospital, Lombardi Cancer Center
3800 Reservoir Road, NW
Washington, DC 20007
Georgetown University Center for Hemophilia and Thrombophilic Disorders is a federally funded, state of the art hemophilia treatment center serving the Washington, D. and suburban Maryland and Virginia area, providing comprehensive care for adults with bleeding disorders, including family-centered medical and psychosocial services, education, and research. Research shows comprehensive care leads to improved medical and quality of life outcomes, including:
- Longer, healthier lives
- Early detection of complications
- Decrease in emotional and social dysfunction
- Lower unemployment rates
- Greater medical insurance coverage
- Integration and stability of family
- Overall high consumer satisfaction
The HTC has a dedicated, multi-disciplinary team of specialists involved in all aspects of a patient’s health and well-being, including a hematologist, two nurse coordinators, social worker, physical therapist, and orthopedic surgeons. Staff also work closely with and can provide guidance and advice to primary care physicians and other physicians who care for patients who have complications associated with bleeding disorders, such as hepatitis C and HIV. Services include:
- Comprehensive Care
- Annual physical exam
- Hepatitis and HIV testing and monitoring
- Orthopedic management
- Psychosocial assessment, support, counseling and referral
- Physical therapy evaluation
- Evaluation and treatment of hemorrhages and complications
- Specialized health care referral
- Education and information
- Access to CDC and RTI clinical research studies
- Specialized medical services
- Specialized emergency room procedures and 24-hour availability of physicians knowledgeable about hemophilia and von Willebrand disease
- Consultation and coordination of hospitalizations and surgeries
- Home infusion instruction
- Prenatal testing of carriers and counseling for spouses and children
- Comprehensive coagulation of laboratory and blood bank