The “National MS and Parkinson’s Disease Registries Act” to establish national registries to better understand and treat neurological diseases was introduced on June 16th by Senators Byron Dorgan, Debbie Stabenow, Mark Udall, and Johnny Isakson.
Currently, a national coordinated system to collect and analyze data on MS or Parkinson’s disease does not exist for the 1.4 million Americans that are affected by both of the diseases. The lack of core information and knowledge about MS and Parkinson’s disease inhibits progress in biomedical research, the development of new and better treatments, and the creation of programs to help people fighting these diseases to live an independent and productive life.
The Agency for Toxic Substances and Disease Registry established a series of small pilot studies beginning in FY 2006 to evaluate the various methodologies that would be needed to create an MS surveillance system at the national level and now there is a need for the system to be developed into a national surveillance system to include not only information on MS but also on Parkinson’s disease.
The legislation recommends grants be awarded through the Director of the Agency for Toxic Substances and Disease Registry to use for the collection, analysis, and reporting of data. The bill would authorize $5,000,000 for each year 2010 through 2014. The legislation also recommends building and coordinating existing data with other public health systems.
The other systems that could be included in the project are the two MS surveillance pilot studies, the Department of Veterans Affairs Parkinson’s Disease and MS databases, current Parkinson’s disease registries in Nebraska and California, the MS registries in New York State, plus any other existing or relevant databases that collect or maintain information on neurological diseases and disorders.
The legislation calls for the establishment of an Advisory Committee on Neurological Disease Registries to include representatives from national voluntary health associations that focus on MS and Parkinson’s disease, NIH, Department of Veterans Affairs, Department of Defense, FDA, CDC, patients with the diseases, family members of the patients, clinicians, research scientists, epidemiologists, geneticists, statisticians, bioethicists, attorneys, and other interested individuals, and experts in the field.
The goal for the Advisory committee would be to not only develop and maintain the surveillance system, but also to use and coordinate existing databases, discuss the type of information to be collected and how it will be collected, the availability of the data, and how the application of the registry methodologies can be used to benefit other neurological diseases and disorders.
On the House side, Representatives Artur Davis, Steve Israel, and Mary Jo Kilroy on June 15th introduced the “Medicare Quality Cancer Care Demonstration Project Act of 2009.” The act would establish a cancer care demonstration to establish quality metrics and align Medicare payment incentives in the areas of treatment planning and end-of-life care for Medicare beneficiaries.
Although two of the critical components of cancer care are treatment planning and end-of-life care, none of the 153 quality measures in the CMS 2009 Physician Quality Reporting Initiative address overall treatment planning or end-of-life care for cancer patients. The medical literature suggests that adherence to quality metrics and evidence-based guidelines helps to lower costs.
The demonstration project would establish quality metrics and align Medicare payment incentives with $300,000,000 to be available each year to use for payments for documented cancer treatments. The demonstration project would also explore the potential to report quality data through registries or other electronic means that also could be used for treatment planning and end-of-life care.