Scientific Advisory Board Fragile X Monday November 27th, 2017 www-x-fragile.be
Agenda • Debrief from annual European Fragile X Network ( EFXN ) meeting/conference • Ongoing research & clinical trials – round table • Supporting framework for the most vulnerable Fragile X patients • Brainstorming on key topics for out planned 2018 Fragile X conference in Belgium • Survey on quality of specialized education in FWB - follow up and next steps • Awareness campaign – postcard/posters for medical emergency services, refresh vade-mecum on Fragile X • Knowledge management – database – Mendeley • Fragile X Clinical & Research Consortium International – FXCRC Membership www-x-fragile.be
Annual European Fragile X Network (EFXN) meeting/conference • 3 – 4 November 2017 • Nyon, Switzerland www-x-fragile.be
Ongoing Research & Clinical Trial • 18th International Fragile X and Related Neurodevelopmental Disorders Workshop, October 12-18, 2017, Saint-Alexis-des-Monts, Quebec, Canada • Université de Washington (St. Louis) - inhibiteur sélectif de PDE4D • https://www.santelog.com/actualites/autisme-x-fragile-un-nouveau-traitement-prometteur- sur-les-symptomes • CRISPR-CAS9 in the news • www-x-fragile.be
Supporting framework for the most vulnerable Fragile X patients • Fragile X in prison – real life case and discussion on how professionals can help • For individuals in institutions, who ultimately decides on treatment (cases of Fragile X patent with ~10 different medicine), what alternative / appeal exist ? • For individuals in institutions, role of psychiatry vs. neurology? www-x-fragile.be
Quality of specialized education in FWB • Initiated by XFB (but not just for FX) • Internet-based, sent to a target group (intellectual disability), anonymous, mostly multiple-choice (easier analysis) • Background questions incl. age, school history • Facts and satisfaction on School, PIA, Bulletin, CPMS, speech therapist & OT support, afterschool-care, lunch, school trips, transport • Child abuse evaluation • follow up and next steps www-x-fragile.be
Knowledge management with Mendeley • Do you think it would be a useful action to manage scientific documents for the SAB this way? • Next steps: • Invite interested persons to private group (after installing Mendeley) • Evaluate wether it us usefull or overkill • Alternative: dropbox/google drive + xls list Private Group Reference Manager Software www-x-fragile.be
Fragile X Clinical & Research Consortium (FXCRC) International Membership • Goals: It is a founding precept that the FXCRC be flexible in its definition of what constitutes a Fragile X clinic. The FXCRC’s goals are: • To ensure that comprehensive evaluation and clinically appropriate treatment, or treatment recommendations, are available within a reasonable geographic distance for all families, and • To advance the pace of research, especially translational research, by engaging families from all member clinics. www-x-fragile.be
X’Presse – Special ‘intellectual disability’ www-x-fragile.be
Association X fragile Belgique asbl • Website: www.x-fragile.be • Facebook: https://www.facebook.com/AssociationXFragileBelgique • Linkedin: • https://www.linkedin.com/company-beta/17926516/ • Contacts for SAB: • François Rycx – francois.rycx@bt.com – 0496 57 35 19 • Bart Bleys – bbleys@hotmail.com – 0489 87 67 19 www-x-fragile.be
Thank you! Your personal commitment makes the difference and gives hope to families www-x-fragile.be
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