National ALS Registry Communications and Outreach Technical Support

This is a Sources Sought notice. This is NOT a solicitation for proposals, proposal abstracts, or quotations. The purpose of this notice is to obtain information regarding the availability and capability of all qualified sources to perform a potential requirement. Background and Need. Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a progressive disease that attacks the nerve cells that control voluntary movement. No one knows for sure what causes ALS and currently there is no cure. The Centers for Disease Control and Prevention (CDC)/Agency for Toxic Substances and Disease Registry (ATSDR), within the U.S. Department of Health and Human Services, have been directed by Congress to gather data for a nationwide ALS registry. The uncertainty in the incidence and prevalence of ALS, as well as the lack of knowledge about the etiology of the disease, has created a need for structured data collection. The ALS Registry Act (H.R. 2295), passed in October 2008, amends the Public Health Service Act to require the Secretary of DHHS, acting through the Director of CDC, to (1) develop a system to collect data on ALS; and (2) establish a national registry for the collection and storage of ALS data. In October 2010, CDC through the federal Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Registry. The National ALS Registry's mission is to better describe the incidence and prevalence of ALS in the US; examine factors, such as environmental and occupational, that might be associated with the disease; better outline key demographic factors (such as age, race or ethnicity, gender, and family history of individuals diagnosed with ALS) associated with the disease; and facilitate examination of the connection between ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS. ATSDR's latest National ALS Registry report estimates that almost 16,000 people in the United States live with the disease. ALS prevalence estimated from registry data was consistent with findings from long-established European registries and smaller-scale epidemiologic studies previously conducted in the United States. (Available at: http://www.cdc.gov/mmwr/pdf/ss/ss6307.pdf). ATSDR has launched a series of initiatives to enhance the National ALS Registry. The Registry's research notification mechanism (available at: http://wwwn.cdc.gov/ALS/ALSClinicalResearch.aspx) connects persons with ALS (PALS) with clinical trials and studies. Over 100,000 e-mail messages have been sent to portal registrants who have opted to receive notifications. In addition, the Registry has funded the National ALS Biorepository. The Biorepository will allow researchers to analyze both pre and post-mortem samples such as serum, blood, saliva, hair, and tissue in order learn more about ALS etiology. These samples will be matched with epidemiological data from the Registry. The Registry is also committed to funding research in order to further the understanding of potential risk factors for ALS. A list of currently funded research can be found here: https://wwwn.cdc.gov/als/ALSExternalResearchfundedbyRegistry.aspx. Purpose and Objectives. The project objective is to promote and increase ALS enrollment through the Muscular Dystrophy Association's (MDA) extensive nationwide network of offices, clinics, and Centers of Excellence so that the Agency can fulfill the congressional mandate under the ALS Registry Act, Public Law No. 110-373. Project Requirements. Provide technical assistance support to update the comprehensive National ALS Registry toolkit and additional educational materials as needed that support and provide guidance to ALS stakeholders (e.g., contractor's chapters and affiliates; ALS patients, family members, and caregivers; and clinical/ research communities) to increase awareness about the National ALS Registry. Any new materials that are developed shall be submitted to ATSDR for review and approval prior to development and distribution. ATSDR/CDC standards will apply so that the Registry toolkit has the appearance of originating from one source (see documents at http://wwwn.cdc.gov/als/ as examples). The new material should be reviewed and approved by ATSDR before proceeding with development of materials and publications. Anticipated period of performance. One 12-month base period and four 12-month option periods. Other important considerations. Deliverables in this requirement have mandated timeframes which, as a consequence are non-negotiable. It is imperative that high quality products are delivered within these strict timeframes. The Government intends to negotiate one firm Performance Base Service award. The NAICS code for this notice is 541990, All Other Professional, Scientific, and Technical Services, Size standards in millions of dollars: $15.0 million Capability statement /information sought. Respondents to this sources sought synopsis shall submit the following information: i. Introductory cover page identifying the respondent's organizational name, address and point of contact information including names, titles, phone numbers and email addresses. ii. Respondents may submit comments or opinions about the difficulty and/or feasibility of the potential requirement or proposed acquisition, possible solutions and approaches that may currently exist in the marketplace, and information regarding innovative ideas or concepts; iii. Submit information regarding respondents: (a) staff expertise, including their availability, experience, and formal and other training; (b) current in-house capability and capacity to perform the work; (c) prior completed projects of similar nature; (d) corporate experience and management capability; and (e) examples of prior completed Government contracts, references, and other related information; iv. Identify respondents' DUNS number, organization name, address, point of contact, and size and type of business (e.g., 8(a), HUB Zone, etc.) pursuant to the applicable NAICS code; 2. Information submission instructions. a. Submission method: submit responses via email to: bbv9@cdc.gov Note: FAX submission not authorized; b. File format: MS Word .doc or .PDF file format; c. Page format: pitch: 12-pt.; font style: Times New Roman; line spacing: single; paragraphs: double space; margins: one-inch; page size: 8.5 x 11; d. Page limit: 10 page limit includes cover page (excluding attachments); e. Organization of Information: Respondents should organize their response in accordance with the paragraph structure identified in Capability statement /information sought paragraph above; f. Response due date and time: responses must be submitted not later than 2:00pm ET, March 16, 2018. g. Respondent's point of contact information: Identify respondents' technical and administrative points of contact, including names, titles, addresses, telephone and e-mail addresses; h. Note: The government is not interested in receiving standard marketing brochures or white papers that do not specifically respond to the requested information. 3. Disclaimer and Important Notes. This notice does not obligate the Government to award a contract or otherwise pay for the information provided in response. The Government reserves the right to use information provided by respondents for any purpose deemed necessary and legally appropriate. Any organization responding to this notice should ensure that its response is complete and sufficiently detailed to allow the Government to determine the organization's qualifications and capabilities to perform the work. Respondents are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. After a review of the responses received, a pre-solicitation synopsis and solicitation may be published in Federal Business Opportunities. However, responses to this notice will not be considered adequate responses to a solicitation. Confidentiality. No proprietary, classified, confidential, or sensitive information should be included in your response. The Government reserves the right to use any non-proprietary technical information in any resultant solicitation(s).