indigosd
Very helpful member
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I just got this today from the ALSA. It seems to me that it is taking a long time to get anywhere. :-(
National ALS Registry Timeline
(as of February, 2010)
October – December 2009
• Launch National ALS Registry website:
Now available on the CDC website at CDC - Amyotrophic Lateral Sclerosis, the National ALS Registry
website includes general information about the ALS Registry, about ALS and answers to
frequently asked questions. The website ultimately will include an online portal that will
enable people with ALS to self enroll in the registry.
• Obtain IRB approval:
Federal law requires that research projects involving humans receives the approval of
Institutional Review Boards (IRBs) to ensure that the rights of patients are protected and
that research meets scientific, ethical and regulatory standards. The ALS Registry has
received IRB approval.
• Send registry data collection to the OMB:
Under the federal Paperwork Reduction Act, all federal agencies are required to obtain
approval from the Office of Management and Budget (OMB) before any data can be
collected from United States citizens. OMB approval ensures that data collection is
justified and meets other requirements, including privacy requirements. The Centers
for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry
(CDC/ATSDR) has submitted the registry to OMB for review, which may take as long as
9‐12 months. The notice that the project has been submitted to OMB is available here:
http://edocket.access.gpo.gov/2010/pdf/2010‐1718.pdf.
• Complete pilot projects
• Analyze pilot data
• Develop web portal for self‐registration
• Select 3 states for state base registry projects:
The CDC/ATSDR will partner with three states to create state based registry projects.
The purpose of the projects is solely to obtain additional data that will identify gaps that
may exist in the National ALS Registry, particularly cases of ALS occurring in rural and
urban underserved areas. The CDC/ATSDR is not duplicating state registry projects in all
50 states. Rather information from the three states will be used to improve the
operation of the National ALS Registry.
January – March 2010
• Write scientific papers for publication
• Hold state‐based registries kick‐off meeting
• Continue development of web portal for self‐registration
• Submit data requests for additional national data:
The CDC/ATSDR will collect information for the registry from national data sets,
including Medicare and Medicaid and the Veterans Administration
April – June 2010
• Submit congressional report for National ALS Registry:
This Report to Congress is required pursuant to the ALS Registry Act (Public Law 110‐
373)
• Hold Annual ALS Surveillance Meeting: The meeting was first convened in 2006 when
The ALS Association worked with Congress to obtain the first year of funding for the
registry. The meeting brings together ALS scientists and clinicians, representatives of
the CDC/ATSDR, national ALS organizations including The ALS Association, and experts in
disease registries.
• Continue development of web portal for self‐registration
• Receive additional data from national data sources
• Submit scientific papers for publication
July – September 2010
• Analyze updated data from national data sources
• Continue development of web portal for self‐registration capability
• Update ALS Registry website
• Develop media campaign announcing self‐registration in ALS Registry:
The ALS Association is partnering with the CDC/ATSDR to promote the ALS Registry,
raise awareness and drive participation in the Registry.
October – December 2010
• Complete web portal development
• Begin registration in web portal, pending OMB approval
• Launch media campaign
National ALS Registry Timeline
(as of February, 2010)
October – December 2009
• Launch National ALS Registry website:
Now available on the CDC website at CDC - Amyotrophic Lateral Sclerosis, the National ALS Registry
website includes general information about the ALS Registry, about ALS and answers to
frequently asked questions. The website ultimately will include an online portal that will
enable people with ALS to self enroll in the registry.
• Obtain IRB approval:
Federal law requires that research projects involving humans receives the approval of
Institutional Review Boards (IRBs) to ensure that the rights of patients are protected and
that research meets scientific, ethical and regulatory standards. The ALS Registry has
received IRB approval.
• Send registry data collection to the OMB:
Under the federal Paperwork Reduction Act, all federal agencies are required to obtain
approval from the Office of Management and Budget (OMB) before any data can be
collected from United States citizens. OMB approval ensures that data collection is
justified and meets other requirements, including privacy requirements. The Centers
for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry
(CDC/ATSDR) has submitted the registry to OMB for review, which may take as long as
9‐12 months. The notice that the project has been submitted to OMB is available here:
http://edocket.access.gpo.gov/2010/pdf/2010‐1718.pdf.
• Complete pilot projects
• Analyze pilot data
• Develop web portal for self‐registration
• Select 3 states for state base registry projects:
The CDC/ATSDR will partner with three states to create state based registry projects.
The purpose of the projects is solely to obtain additional data that will identify gaps that
may exist in the National ALS Registry, particularly cases of ALS occurring in rural and
urban underserved areas. The CDC/ATSDR is not duplicating state registry projects in all
50 states. Rather information from the three states will be used to improve the
operation of the National ALS Registry.
January – March 2010
• Write scientific papers for publication
• Hold state‐based registries kick‐off meeting
• Continue development of web portal for self‐registration
• Submit data requests for additional national data:
The CDC/ATSDR will collect information for the registry from national data sets,
including Medicare and Medicaid and the Veterans Administration
April – June 2010
• Submit congressional report for National ALS Registry:
This Report to Congress is required pursuant to the ALS Registry Act (Public Law 110‐
373)
• Hold Annual ALS Surveillance Meeting: The meeting was first convened in 2006 when
The ALS Association worked with Congress to obtain the first year of funding for the
registry. The meeting brings together ALS scientists and clinicians, representatives of
the CDC/ATSDR, national ALS organizations including The ALS Association, and experts in
disease registries.
• Continue development of web portal for self‐registration
• Receive additional data from national data sources
• Submit scientific papers for publication
July – September 2010
• Analyze updated data from national data sources
• Continue development of web portal for self‐registration capability
• Update ALS Registry website
• Develop media campaign announcing self‐registration in ALS Registry:
The ALS Association is partnering with the CDC/ATSDR to promote the ALS Registry,
raise awareness and drive participation in the Registry.
October – December 2010
• Complete web portal development
• Begin registration in web portal, pending OMB approval
• Launch media campaign