of the proposed activity suitable for dissemination to the public. It should be a self-contained description of the project and should contain a statement of objectives and methods to be employed. It should be informative to other persons working in the same or related fields and insofar as possible understandable to a technically liter- ate lay reader. This Abstract must not include any proprietary/confidential information. * Please click the add attachment button to complete this entry. 5192-2007_CDC_Project_Abstract.pdf Tracking Number: GRANT00387973 Attachments ProjectAbstractAddAttachment File Name Mime Type 5192-2007_CDC_Project_Abstract.pdf application/pdf Tracking Number: GRANT00387973 National Fragile X Foundation 11th International Fragile X Conference Proposal Abstract Public Health Conference Support Program - Cycle A Funding Opportunity #: CDC-PA-HM08-801 NCBDDD Topic Area: 300.1 Birth Defects The National Fragile X Foundation's biennial International Conferences are an important and unique experience for hundreds of families of those affected by one or more of the three Fragile X- related conditions; fragile X syndrome (FXS), fragile X-associated tremor/ataxia syndrome (FXTAS) and fragile X-associated primary ovarian insufficiency (FXPOI). From intensive exchanges on the implications of current research to family friendly sessions on stress management, this conference addresses a wide range of important Fragile X-related public health and research topics. Distinctive in its personal approach and sensitivity to families, the conference is organized around dozens of scientific and family-friendly sessions. Topics are organized and selected to reflect the expressed needs and interests of families. th This 11 International Conference will be the first since the establishment of the Fragile X Clinics Consortium. Formed in 2006 by the NFXF, the Fragile X Clinics Consortium serves a number of public health needs, including the development of a knowledge base for treatment of difficult cases and the establishment of a structure for collaborative research and implementation efforts, including drug trials and public health surveillance. The geographic proximity of existing Fragile X Clinics to the CDC's Centers for Autism and Developmental Disabilities, Research and Epidemiology (CADDRE) and Autism and Developmental Disabilities Monitoring (ADDM) Network provide an ideal foundation upon which to develop and deliver a comprehensive and organized approach to addressing the public health needs of the Fragile X Community. Among the objectives of the conference are improved intervention for both families and professionals, and addressing Fragile X-related public health initiatives by broadening and strengthening support for families. Approximately 1000 combined guests and speakers will attend the conference. Twenty-five members of the NFXF's Scientific and Clinical Advisory Committee, who themselves have been elected based on their proven expertise as FX researchers or clinicians, will comprise the planning group for professional-focused sessions. They will join a group of staff and board members in the selection of family-friendly session. A comprehensive outreach and registration process, including the identification of families with financial need and underrepresented families, will be initiated through NFXF's network of family groups. Conference registration will be accomplished by mail or electronically months in advance of the conference. The CADDRE and ADDM Network, in conjunction with the Fragile X Clinics Consortium, will play a critical role in the structured dissemination and replication of conference objectives. In addition, a comprehensive evaluation and continuous improvement plan will be in place to measure all aspects of the conference and inform future conferences. Project Narrative File(s) FileName MimeType 6566-Mandatory_2007_CDC_Proposal_Narrati ve.pdf application/pdf Tracking Number: GRANT00387973
