| Summary of The SMA Treatment Acceleration Act |
The SMA Treatment Acceleration Act authorizes federal funding to support the efforts of the national non-profit organizations such as Families of SMA that are investing substantial private funding into finding a treatment for SMA. Passage of this landmark legislation will enable scientific investigators to mount national clinical trials to demonstrate whether potential treatments are safe and effective for SMA patients. Specifically, the bill authorizes federal funding in order to: 1. Upgrade and unify SMA clinical trials sites and establish a national clinical trials network for SMA. 2. Establish a Data Coordinating Center to provide expert assistance and advice to SMA clinical trials sites. 3. Expand and intensify federally supported research programs with respect to pre-clinical translational research related to SMA. 4. Enhance the SMA patient registry and for expanded research on the epidemiology of SMA. 5. Establish an Interagency SMA Research Coordinating Committee, consisting of representatives from relevant government agencies and the public, to coordinate government activities relating to SMA, develop a comprehensive strategy for improving and expanding SMA research, make recommendations to strengthen collaborative research across multiple institutes at NIH, and identify barriers to the development of drugs for treating SMA. 6. Promote collaborative research at the National Institutes of Health to ensure cooperation across multiple Institutes regarding research related to SMA. 7. Establish and implement a program for providing information and education on SMA to health professionals and the general public related to advances in the screening, diagnosis and treatment of SMA and the provision of care to SMA patients.
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