The objective of this application is to prevent complications of hemophilia by implementing prevention programs based on knowledge gained in clinical research in multidisciplinary comprehensive care clinics.
The specific aims are (1) expand the provision of comprehensive prevention services to persons with bleeding disorders, (2) increase the number of individuals served and recruited to the UDC and other prevention studies, (3) facilitate access to appropriate training resources for HTC personnel, (4) coordinate the development program plans, goals, objectives, monitoring and reporting for the HTCs in the Region;and develop appropriate management and evaluation systems to ensure that the HTCs implement the activities of this program, (5) continue to collect data related to infectious and bleeding complications that could be used for clinical research leading to improved care for the patients using these centers and develop local research protocols, and (6) participate fully in the Coordinating Committee. To meet these specific aims, the Region will (1) maintain a core staff and relationships with other providers and have these available at clinics where the UDC study is being conducted, (2) complete the implementation of the Lab Tracker database and use it and the UDC to target underserved areas, (3) offer several opportunities for staff training, (4) continue the use of two evaluation tools to measure the effectiveness of the HTCs, (5) continue to make efforts to enroll patients focusing on the annual reevaluation and the enrollment of children under the age of two, and (6) the principal investigator will take an active role in the coordinating committee as they work to expand the reach of the research activities of the HTCs. This research will significantly improve the lives of individuals with hemophilia and other bleeding disorders by leading to the development of better treatment regimens. The knowledge gained can also be of benefit to others with chronic disorders as we better define the impact of these disorders on the individual and their family. Lastly it may have a more global impact as we design interventions in the bleeding disorders community to address common problems such as obesity which has added impact to the joints of individuals with bleeding disorders.
| Cost, C R; Journeycake, J M (2011) Deep venous thrombosis screening in patients with inherited bleeding disorders and central venous catheters. Haemophilia 17:890-4 |
