MASAC Recommendation #102
MASAC Recommendation Regarding the Need for Collaborative Effort to Collect Data Regarding Interventions to Prevent Joint Damage Secondary to Hemophilia
The following recommendation was approved by the Medical and Scientific Advisory Council (MASAC) on November 11, 2000 and adopted by the NHF Board of Directors on November 12, 2000.
Progressive joint destruction contributes major morbidity to persons with hemophilia. Currently, there are multiple approaches to prevent or ameliorate early joint inflammation (synovitis) including prophylaxis (regular replacement factor infusions), radiosynoviorthesis (injections of radioactive material into the affected joint to decrease hemorrhage), and surgical synovectomy (surgical removal of the inflamed synovial tissue through an arthroscope or in an open surgery).
All of these approaches are very effective in decreasing the rate of bleeding. However, the treatments described above vary considerably in cost, pain, effort on the part of the person treated, and potential complications. The comparative long-term safety and efficacy are unknown. It is in the interest of the entire hemophilia community that results of current treatments be pooled and compared to provide useful information to persons considering joint treatments in the future. Persons with hemophilia are urged to collaborate with hemophilia care providers within the hemophilia treatment centers network in the collection of outcome data in order to direct future clinical care and to facilitate earliest possible detection of best outcomes as well as complications or untoward effects.