The National Hemophilia Foundation (NHF) supports the development of comprehensive outcome measures for the treatment of bleeding disorders and their complications, with the goal of improving the quality of care for individuals with congenital bleeding disorders. Towards this end, the NHF endorses the efforts of persons and families affected with hemophilia as well as hemophilia treatment centers to encourage participation in the CDC-sponsored outcome instrument, the Universal Data Collection (UDC) project.
In addition to the ongoing UDC, the NHF supports continued efforts to develop better instruments to measure hemophilia outcomes such as assessments of joint structure and function, quality of life, and school functioning.
References:
1. Soucie JM, Nuss R, Evatt B et al. Mortality among males with hemophilia: relations with source of medical care. Blood 2000; 96:437-42.
2. Nuss R, Kilcoyne RF, Geraghty S et al. MRI findings in haemophilic joints treated with radiosynoviorthesis with development of an MRI scale of joint damage. Haemophilia 2000; 6:162-9.
3. Manco-Johnson MJ, Nuss R, Funk S, Murphy J. Joint evaluation instruments for children and adults with hemophilia. Haemophilia 2000, in press.
4. Shapiro AD et al. Defining the impact of hemophilia: The academic achievement in children with hemophilia study. Submitted to Lancet 2000.