Search:
 
This image is of a spacer graphic
NHF Face Book NHF Twitter
+ Login to my NHF
+ NHF Membership
+ Donate to NHF
+ Chapter Center
+ Hechos y Respuestas Rápidas
+ Ethics Advisory Committee
This image is of a spacer graphic
-Researchers and Healthcare Providers
 Research Grants Program
-Medical and Scientific Advisory Council
 Recent Recommendations
 What is MASAC?
 All MASAC Recommendations
 MASAC Members
 Nursing Working Group
 Social Work Working Group
 Physical Therapy Working Group
 Comprehensive Medical Care - Hemophilia Treatment Centers
 Cell Based Coagulation Animation
 Rare Bleeding and Clotting Disorders Resource Room
 The Partners in Bleeding Disorders Education Program
 NHF/Novo Nordisk HANDI Library

 

 

 
MASAC Recommendation #111- MASAC Resolution Concerning the Development of Comprehensive Outcome Measures
 
MASAC Recommendation #111

MASAC Resolution Concerning the Development of Comprehensive Outcome Measures


The following resolution was approved by the Medical and Scientific Advisory Council (MASAC) on February 23, 2001, and adopted by the NHF Board of Directors on March 4, 2001.

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.