To help them understand how to cope, we pair them up with experienced parents. For instance, if a child is getting a port put in, we'll pair up that family with parents who have already been through this experience. But the HTC team often goes far above and beyond treating just the physical health of the patient. At the Cleveland HTC, parents are part of a hemophilia advisory group that helps the HTC team learn what families need, what problems they face, and how the HTC can help. One suggestion resulted in a horseback riding program for children with hemophilia, started through a grant request by one of the mothers.
Butcher confirms that HTCs do more than just treat bleeds.
It just goes way beyond the hemophilia needs. Studying the Future A number of HTCs take part in research projects, both clinical and social, to help patients. It's very rewarding to work together as a group to try and make things better for the hemophilia patient. The University Hospitals of Cleveland HTC is just starting the universal data collection study, a Centers for Disease Control and Prevention initiative that will look at the complications that hemophilia patients experience and will study whether interventions like prophylaxis or on-demand treatment are effective, according to Keverline. The HTC also contributed to the national hemophilia awareness study, which examined the care of hemophilia patients.