Scientific Advisory Board Fragile X Monday May 29 th , 2017 S
Introduction S Round table - intro S Simply using your native language S Feel free to intervene at all time – this is your meeting
Agenda S Survey on quality of specialized education in FWB - follow up and next steps S IQ S Intellectual disability vs. mental disorder S Awareness campaign – postcard/posters for medical emergency services S Awareness campaign – refresh vade-mecum on Fragile X S Ongoing research & clinical trials – round table S Advisory report 9240 on carrier screening S Vitamin C & E S Metformine S AOB - Update from our association, structure & new LinkedIn page S AOB - Knowledge management with Mendeley (or equivalent)
Quality of specialized education in FWB S Initiated by XFB and then in collaboration with more parent associations (not just for FX) S Internet-based, sent to a target group (intellectual disability), anonymous, mostly multiple-choice (easier analysis) S Background questions incl. age, school history S Facts and satisfaction on School, PIA, Bulletin, CPMS, speech therapist & OT support, afterschool-care, lunch, school trips, transport S Child abuse evaluation S Follow up and next steps
IQ S Round table and guidance for parents and professionals on its use and relevance
Intellectual disability vs. mental disorder S Which references to use when they are confused S Fragile X and Psychiatry
Awareness campaigns S postcard/posters for medical emergency services S refresh vade-mecum on Fragile X
Ongoing Research & Clinical Trial S Berry-Kravis (Rush University) antagoniste des récepteurs mGluR5 (appelé AFQ056) S Children age 3 – 6 S May 2017 S S Steve Majerus/Sophie Huckert (Liège University) Improve learning capabilities and attention S Children age 5 – 25 S April 2017 S S Other research
Advisory report 9240 on carrier screening S Superior Health Council – March 2017 S http://www.health.belgium.be/fr/avis-9240-depistage-genetique
Vitamin C & E S http://www.trialsjournal.com/imedia/1726005310131504_manuscript. pdf S Interview with Yolanda De Diego Otero (March 2017) S A combination of Ascorbic acid and Alpha-tocopherol to test the effectiveness and safety in the Fragile X syndrome: study protocol for a phase II randomized placebo-controlled trial S 10 mg/kg/day of both Vitamins
Metmorfine S http://www.nature.com/nm/journal/vaop/ncurrent/full/nm.4335.html? WT.feed_name=subjects_genetics S http://neurosciencenews.com/diabetes-drug-fragile-x-6675/ S Diabetes drug
Update from our association, structure & new LinkedIn page S https://www.linkedin.com/company-beta/17926516/
Knowledge management with Mendeley (or equivalent) S Reference manager software
Knowledge management with Mendeley (or equivalent) S Do you think it would be a useful action to manage scientific documents for the SAB this way? S Do you already use a reference manager? Which one? S Next steps: S Compare de different softwares (Mendeley, Quiqqa, Endnote, Zotero, …): cost for online account and storage size S https://en.wikipedia.org/wiki/Comparison_of_reference_management_software S Alternative: dropbox/google drive + xls list
X’Presse – Special ‘intellectual disability’
Latest News to share? Round table S
Thank you! Your personal commitment makes the difference and gives hope to families S
Association X fragile Belgique asbl S Website: www.x-fragile.be S Facebook: https://www.facebook.com/AssociationXFragileBelgique S Linkedin: https://www.linkedin.com/company-beta/17926516/ S Contacts for SAB: François Rycx – francois.rycx@bt.com – 0496 57 35 19 Bart Bleys – bbleys@hotmail.com – 0489 87 67 19
Werkgroep Fragiel X S Website: www.fragiel.be
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