The Penn Comprehensive Hemophilia and Thrombosis Program (PCHP) is a member of a select network of nationally designated comprehensive hemophilia centers that care for patients with congenital bleeding disorders.
The PCHP provides comprehensive care using:
- Multidisciplinary teams including physicians, nurses, social workers and physical therapists to provide for the multifaceted needs of the patient with an inherited bleeding condition.
- Patient- and family-centered models of care focus first on the needs of patients and their families.
- State-of-the-art diagnostic and management tools to provide outstanding care to adult patients of all ages.
A Continuum of Care for Patients and Families
Providers at the PCHP recognize the importance of providing uninterrupted care to patients with congenital bleeding disorders from birth to advanced age.
PCHP social workers, nurses and physicians work closely with pediatric providers before patients are formally transitioned to adult care in order to ensure a smooth progression of care and keep patients with bleeding disorders healthy. In conjunction with the Children's Hospital of Philadelphia (CHOP), PCHP providers provide care to adolescents in a specialized clinic to prepare for their transition from pediatric to adult care.
Penn hemophilia and thrombosis specialists also provide educational programs for patients and families as well as patient and family education for home infusion therapy.
A Multidisciplinary Approach to Care
People with congenital bleeding disorders require the expertise of a variety of health specialists. The PCHP joins providers from a variety of disciplines, and ensures access to top-tier, Penn specialists across a wide range of specialties under one roof.
- Unique to only a select number of hemophilia centers, a board-certified orthopaedic surgeon is part of the core provider team at the PCHP and sees patients in the PCHP clinic alongside physical therapists and hematologists.
- In addition to caring for patients with hemophilia and rare bleeding disorders, PCHP providers specialize in women's bleeding disorders, and work in close collaboration with Penn OB/GYN Care to provide outstanding care to women with high-risk conditions including pregnancy. Genetic counseling services are available on-site through the PCHP genetic counselor.
- Providers at the PCHP work closely with other specialties at Penn Medicine including oral surgery, dental care, gastroenterology and general surgery.
Services in the Comprehensive Hemophilia and Thrombosis Program
Services offered within the PCHP include:
- Comprehensive clinical services at annual or semi-annual visits for individuals with inherited bleeding disorders.
- 24-hour, 7-day-a-week availability of hematology physicians for patients with bleeding and thrombotic conditions.
- Acute care including same-day appointments for bleeding concerns, and routine appointments.
- In-clinic social work, physical therapy, orthopaedic and genetic counseling services.
- Multidisciplinary education for diagnosis and treatment of bleeding and clotting disorders, utilizing in-clinic teaching sessions and resource materials.
- Nursing education and training for home infusion of clotting factor concentrate and home therapy using hemostatic agents, and anticoagulation teaching.
- Coordination of referrals with specialty and subspecialty providers including coordination of surgical care.
- Referral to community-based organizations, nursing agencies, and resources for continued access to care as needed.
- In-clinic phlebotomy and infusion services.
The Penn Difference: PCHP Marks of Excellence
- The Penn Comprehensive Hemophilia and Thrombosis Program (PCHP) served as the core center for the Region III federally funded Hemophilia Treatment Centers from 1996-2008.
- Penn hematologists were instrumental in implementing Project Red Flag, the National Hemophilia Foundation's campaign to raise awareness for women with blood disorders.
- PCHP staff members have been awarded the National Hemophilia Foundation 1995 Social Worker of the Year Award, and the 2004 Physical Therapist of the Year Award.
- PCHP hematologists are published experts in areas such as:
- Aging and hemophilia
- New products for bleeding disorders
- Orthopaedic outcomes in persons with hemophilia with and without inhibitors
- Septic arthritis in males with hemophilia
- Joint range of motion limitations
- Physical therapy evaluation, intervention and recommendations
- Educational attainment among persons with hemophilia
- Effects of insurance on home therapy and prophylaxis; and pregnancy alternatives for HIV discordant couples.
- PCHP specialists have trained and educated health care providers nationally and internationally concerning advances in hemophilia care and best practices in treating blood disorders.
- PCHP works closely with the CHOP hemophilia team to transition adolescent/young adult patients, and has a dedicated transition clinic in Voorhees, NJ.
- Through research at Penn Medicine, patients have the opportunity to participate in clinical trials using innovative treatments for blood disorders.
- The PCHP is part of the American Thrombosis and Hemostasis Network, which allows Penn specialists access to treatment data, treatment outcomes, and studies in order to develop new and advanced treatment protocols.
- The PCHP supports patient choice of factor concentrate and factor provider, and has a federally approved 340b factor program that allows the PCHP to continue to provide top-tier hemophilia care and promote bleeding disorder education and outreach programs.
- Specialists within the PCHP share the same clinical and office space including onsite phlebotomy and research labs to ensure patients get the best care from many disciplines and benefit from discoveries in leading-edge research in a collaborative environment.
Penn Comprehensive Hemophilia and Thrombosis Program Team
Hematologists in the PCHP include: