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2012 ALS Annual Meeting Summary Report Pdf Icon[PDF – 2 Department of Health and Human Services Centers for Disease Control and Prevention Agency for Toxic Substances and Disease Registry ATSDR’s Annual Amyotrophic Lateral Sclerosis (ALS) Surveillance Meeting June 25-26, 2012 Summary Report This document has not been revised or edited to conform to agency standards. The findings and conclusions in this report are those of the meeting presenters and attendees and do not necessarily represent the views of the Agency for Toxic Substances and Disease Registry. 1 ATSDR’s Annual ALS Surveillance Meeting Summary Report June 25-26, 2012 Table of Contents ACRONYMS ............................................................................................................................................................ 3 THEME / PURPOSE ................................................................................................................................................. 5 WELCOME / INTRODUCTIONS ................................................................................................................................ 5 OPENING REMARKS ............................................................................................................................................... 5 OVERVIEW OF THE NATIONAL ALS REGISTRY ......................................................................................................... 7 CME TRAINING MODULE AND TUTORIAL VIDEO .................................................................................................. 13 NATIONAL QUALITATIVE & QUANTITATIVE DATA FINDINGS ............................................................................... 17 REGISTRY OUTREACH AND MARKETING UPDATE................................................................................................. 25 STATE- / METRO-BASED ALS SURVEILLANCE ........................................................................................................ 37 UPDATES FROM REGISTRY PARTNERS ................................................................................................................. 43 BIOREPOSITORY FOR ALS SPECIMENS .................................................................................................................. 48 PALS’ PERSPECTIVE ON THE REGISTRY ................................................................................................................. 56 END OF THE DAY QUESTIONS SESSION ................................................................................................................ 63 RESEARCH NOTIFICATION COMPONENT .............................................................................................................. 64 CREATION OF A REVIEW GROUP FOR DATA REQUESTS ........................................................................................ 70 CURRENT AND PROPOSED NIH ALS RESEARCH .................................................................................................... 78 OMB SUBMISSION ............................................................................................................................................... 90 NEXT STEPS AND STRATEGIES FOR ENHANCING THE NATIONAL ALS REGISTRY ................................................... 93 CLOSING REMARKS .............................................................................................................................................. 95 PARTICIPANT ROSTER .......................................................................................................................................... 98 2 ATSDR’s Annual ALS Surveillance Meeting Summary Report June 25-26, 2012 Acronyms Acronym Expansion AAN American Association of Neurology ACA Affordable Care Act ACS American Cancer Society ALS Amyotrophic Lateral Sclerosis ALSRG Amyotrophic Lateral Sclerosis Research Group ALSA Amyotrophic Lateral Sclerosis Association ALSFRS-R Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised ALSTDI ALS Therapy Development Institute APHA American Public Health Association APOE Apolipoprotein E ApoL1 Apolipoprotein L1 ATSDR Agency for Toxic Substances and Disease Registry BMI Body Mass Index C9ORF72 Chromosome 9 Open Reading Frame 72 CDC Centers for Disease Control and Prevention CD-CV Common Disease-Common Variant CD-RV Common Disease-Rare Variant CMS Centers for Medicare and Medicaid Services COPD Chronic Obstructive Pulmonary Disease CPS Current Population Surveys CPS-II Cancer Prevention Study II, ACS CSF Cerebrospinal Fluid CSTE Council of State and Territorial Epidemiologists dbGAP Database of Genotypes and Phenotypes DoD Department of Defense DTHHS Division of Toxicology and Human Health Sciences, ATSDR EDTA Ethylenediaminetetraacetic acid EMR Electronic Medical Records FDA Food and Drug Administration FTD Frontotemporal Dementia FY Fiscal Year GWAS Genome-Wide Association Studies HCSC Health Care Services Coordinators HDL High-Density Lipoprotein HHS (United States Department of) Health and Human Services HIPAA Health Insurance Portability and Accountability Act ICD International Classification of Diseases IOM Institute of Medicine iPS Induced Pluripotent Stem IRB Institutional Review Board MDA Muscular Dystrophy Association miRNA Micro Ribonucleic Acid MND Motor Neuron Disease NCBI National Center for Biotechnology Information (NIH) NCI National Cancer Institute 3 ATSDR’s Annual ALS Surveillance Meeting Summary Report June 25-26, 2012 Acronym Expansion NCHS National Center for Health Statistics NDAR National Database for Autism Research NDI National Death Index NEALS Northeast Amyotrophic Lateral Sclerosis Consortium NHANES National Health and Nutrition Examination Survey NIA National Institute on Aging (NIH) NIEHS National Institute of Environmental Health Sciences (NIH) NIH National Institutes of Health NINDS National Institute of Neurological Disorders and Stroke NLMS National Longitudinal Mortality Study OMB Office of Management and Budget PALS Persons with Amyotrophic Lateral Sclerosis PLF Perilymph Fistula PMI Post-Mortem Interval PON Paraoxonase Enzymes PSA Public Service Announcement RDC Research Data Center (CDC) RNA Ribonucleic Acid SNP Single Nucleotide Polymorphism SOD1 Superoxide Dismutase 1 SOP Standard Operating Procedure SORN Privacy Act System of Records Notice SSN Social Security Numbers STD Sexually Transmitted Disease TBI Traumatic Brain Injury TDP-43 Transactivation Response (TAR) DNA binding protein-43 UK United Kingdom US United States VA (United States Department of) Veterans Affairs VAB (United States Department of) Veterans Affairs Biorepository VBA Veterans Benefits Administration VHA Veterans Health Administration WTC World Trade Center 4 ATSDR’s Annual ALS Surveillance Meeting Summary Report June 25-26, 2012 Centers for Disease Control and Prevention (CDC) Agency for Toxic Substances and Disease Registry (ATSDR) ATSDR’s ALS Surveillance Meeting Minutes of the Meeting June 25-26, 2012 Theme / Purpose Theme: Status and Next Steps for the National ALS Registry Purpose: Update stakeholders on the progress of the National ALS Registry and discuss strategies to further enhance the Registry for all stakeholders. Welcome / Introductions Robert Kingon, MPA, Facilitator Carter Consulting, Inc. Mr. Kingon welcomed everyone, indicating that he would serve as the meeting facilitator. He acknowledged that the annual ALS meeting is always very productive, with many good questions and ideas. After reviewing housekeeping and meeting procedures, he called for introductions. A roster of those in attendance is included at the end of this document. Opening Remarks Christopher J. Portier, PhD Director, Agency for Toxic Substances and Disease Registry/National Center for Environmental Health Dr. Portier welcomed everyone to Atlanta, and thanked them for their attendance and participation. He expressed the ATSDR’s gratitude for the time everyone has put into the Registry in order to make it as successful as possible. It is known that ALS is a devastating and fatal disease. It not only affects the people with ALS, but also affects their families, their friends, and everyone around them. No cause for ALS has been readily identified, and everyone holds hope that a cause can be discovered in the near future. The National ALS Registry is a groundbreaking effort to help scientists as they work toward a cure for ALS. Since going live in October 2010, the National ALS Registry has collected demographic and risk factor data on thousands of people with ALS in all 50 states. More people with ALS are signing on every day. The National ALS Registry also has some very exciting new initiatives that ATSDR hoped the participants would enjoy discussing and offering advice on in terms of how to move forward. This included the Bioregistry Feasibility Study, a mechanism that informs Persons with ALS (PALS) about researchers interested in recruiting PALS enrolled in the Registry to participate in their ALS clinical trials and studies; and the State- / Metro-Based Surveillance Activities. 5 ATSDR’s Annual ALS Surveillance Meeting Summary Report June 25-26, 2012 Many people have asked about the reorganization of ATSDR. Since coming to the Centers for Disease Control and Prevention (CDC) two years ago, Dr. Portier indicated that he began studying ATSDR in terms of how it functions, its mission and objectives, and how it could be made more effective. In doing that, he brought in outside consultants who gave him good advice in terms of matching function to organizational structure, to the overall objectives of the agency.
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