Hemophilia Treatment Center - Pediatric
Children’s National Medical Center’s Hemophilia Treatment Center
History of the HTC
The Hemophilia Treatment Center (HTC) at Children’s National Medical Center 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.
In the 1980’s, Children’s Hemophilia Treatment Center was one of the lead institutions in performing clinical trials in hemophilia treatment with improved safety. Children’s HTC staff continues to be involved in the search for safer blood and blood products, offered to our patients through clinical research protocols.
What Children’s HTC has to offer
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A multi-disciplinary team integrating medical, psychosocial and subspecialty care in a family centered environment with a special emphasis on the pediatric patient.
Comprehensive Evaluation, at least annually and sometimes more often with evaluation by the Hematologist, nurse practitioner, social worker and physical therapist.
A genetic counselor is available for mutation analysis, carrier testing and pre-natal evaluation.
Integration of the family into clinical decision-making.
Attending physicians and fellows available 24 hours a day, seven days a week
A series of different clinical trial options, particularly for previously untreated patients
New parent teaching and home and self-infusion training sessions for parents and patients
Full service on-site laboratory with tests to diagnose hemophilia identify inhibitors and other complex bleeding disorders
Blood bank with a supply of factor concentrates
Accessibility in the community at Children’s Rockville and Northern Virginia Regional Outpatient Facilities
Educational Programs and networking opportunities for families. Events include: New Parent’s Breakfast, Transition seminars, regular venipuncture classes, bike rodeo
Coordinate care for surgical or complex medical issues
State of the art emergency room facilities
Important Questions
What do I need to do to find out if my child has Hemophilia or any other
bleeding disorder?
Your pediatrician just needs to call the HTC and make a referral. The physicians and nurses at Children’s National Medical Center are experts at diagnosing and treating children with bleeding disorders.
What happens if my child is diagnosed with a bleeding disorder?
The multi-disciplinary staff at Children’s is ready to assist in making decisions regarding treatment and follow-up. This multi-disciplinary team integrates medical, psychosocial and subspecialty care in a family-centered environment with a special emphasis on the pediatric patient. Our patient choice policy enables you to make an informed decision about home care services available in the community that will meet your needs.
What is comprehensive care?
Comprehensive care enables your child to be evaluated by the entire Comprehensive Care Team, which includes hematologists, nurses, nurse practitioners, physical therapist, social workers as well as dentists, orthopedic surgeons and other services, as necessary. Comprehensive care also means physicians and fellows available are available 24 hours a day seven days a week.
What treatment options are available for children with bleeding disorders at Children’s National Medical Center?
Children’s Comprehensive Treatment team works to design a treatment plan that meets each child’s individual needs. The child’s pediatrician/primary care provider is kept informed about the hemophilia treatment, from the initial comprehensive visit to all subsequent visits. The HTC participates in many state of the art treatment protocols to further enhance your child’s health.
The new state of the art clinic provides a comfortable atmosphere for patients and families with separate laboratory facilities to limit waiting times. The art therapy program provides activities for patients allowing parents the time they need to meet with staff separately.
The new inpatient unit makes the occasional admissions to the hospital more pleasant with patient and family friendly services including private rooms, internet access, on-demand movies and a la carte dining.
Children’s Hemophilia Treatment Center has a factor program that provides factor concentrates to our patients. The proceeds from this factor program go back to the Center and directly benefit the patients by providing funding for educational programs, staffing and equipment.
Children’s and the National Hemophilia Prevention Plan
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Annual Comprehensive Visit
Annual comprehensive visits prevent and/or reduce the complications of hemophilia and other bleeding disorders. A dedicated team knowledgeable about the latest treatments can educate the family and ancillary health care providers to optimize the child’s health and well being. People who use hemophilia treatment centers live longer healthier lives.
When your child comes to Children’s with a bleeding disorder, he/she has access to a Hematologist, Nurse Practitioner, Physical Therapist and Social Worker who are all members of our Comprehensive Treatment team. If necessary, children and families can be referred at the same visit to subspecialists in Orthopedics, Dentistry, Psychology or Genetics. Hepatitis A and B are Preventable Diseases
Preventative healthcare is important to families. Children’s offers testing and educational information for the patients of the Hemophilia Treatment Center to aid in the process of prevention. Treat Bleeds Early and Adequately
The Hemophilia Treatment Center educates patients and families how to recognize a bleeding event and to seek treatment quickly, with close follow-up.Patients are provided with “travel letters” that inform other caregivers about the most recent recommendations. The nursing staff provides education to local emergency departments about how to manage patients with bleeding disorders. Exercise to Protect Your Joints
At CNMC and Regional Outpatient Facilities, the Physical Therapist evaluates all patients at the time of their comprehensive visit. A safe exercise program is then recommended to strengthen muscles in order to protect the patient’s joints. Get Tested Regularly for Blood-Borne Infections
Hemophilia Treatment Center participates in the CDC universal data collection study. The CDC developed the study to monitor the two major complications of bleeding disorders, blood borne disease and joint disease. In the past, the HTC participated in the NIH, NCI’s Multicenter Hemophilia Cohort Study, which followed patients anonymously for HIV and Hepatitis C.