BEGIN:VCALENDAR VERSION:2.0 PRODID:-//wp-events-plugin.com//7.2.2.1//EN BEGIN:VEVENT UID:5@ctnnb1-foundation.org DTSTART:20260428T000000Z DTEND:20260428T000000Z DTSTAMP:20260420T132204Z URL:https://ctnnb1-foundation.org/events/dragonfly-natural-history-study-n hs-clinical-examination/ SUMMARY:Dragonfly Natural History Study (NHS) - Clinical Examination DESCRIPTION:Dragonfly Natural History Study (NHS) - Clinical Examination Re gistration Form\nImportant notice\nThis form is for NHS clinical examinati ons only.\n\nConference registration is handled separately. To register fo r the 4th International CTNNB1 Syndrome Conference\, please follow this li nk.\n\n\n\nBefore completing your payment\, please contact our study staff at  nhs@ctnnb1-foundation.org  if you have any questions or concerns\,\ nas tickets are non-refundable once purchased.\n\n\n\nStudy registration p eriod\n\n Open until: March 1\, 2026\n Or until all available examinatio n slots are filled\n\nPlease note that the number of participants per stud y site is limited. Because this is a long-term (longitudinal) study\, chil dren who are already enrolled in the Dragonfly Study will be prioritized a nd registered first\, followed by new participants as capacity allows.\n\n [table id=8 /]\nPlease note that examinations for each child typically tak e two days (usually one day for medical/physical examinations and one da y for psychological assessments).\nFor Ljubljana and Boston\, you may i ndicate your preferred two examination days in the registration comment se ction\, and we will do our best to accommodate your request.\nFor Barcelo na\, we kindly ask that you plan your stay for the entire examination per iod (June 16–19) to allow for scheduling and organizational requirement s.\n\n\n\n\nWelcome message\n\nDear parents and caregivers\,\n\nWe warmly invite you to register your child for participation in the Dragonfly Study \, the first international CTNNB1 Natural History Study.\n\nThe Dragonfly Study launched in 2024 as a critical step toward our first CTNNB1 clinical trial. Since then\, more than 100 families have participated across multi ple countries.\n\nSince then\, we have opened several clinical sites to re duce the burden of families needed to travel\, including Slovenia\, Spain\ , United States\, Australia\, Canada (starting in Q1 2026) and Brazil (pla nned for 2026).\n\nTaking part in the Dragonfly study is not required to a pply for the GAIN-CTNNB1 trial. However\, children who participate in Drag onfly have a higher likelihood of being selected. \n\n\n\nWhy participati on matters\n\nIn the GAIN-CTNNB1 clinical trial\, each child serves as the ir own control. To demonstrate that a future therapy truly works\, we must compare development before and after treatment. Longitudinal data collect ed over months or years prior to dosing is essential for proving efficacy and advancing treatments.\n\n\n\nREGISTRATION GUIDE\nPlease read carefully before booking tickets\n \;\n\n*Important Notice: Please Do Not Trans late This Page\n\nTo ensure a smooth and accurate registration process\, w e kindly ask that you do not use your browser's direct translation feature while filling out the conference registration form. Using automatic trans lation can sometimes alter the form fields\, leading to errors or incomple te submissions.\n\nWe've made every effort to make the registration form a s accessible as possible. If you're facing language barriers or need assis tance with the form\, please do not hesitate to contact us at bruno@ctnnb1 -foundation.org. Our team is more than happy to assist you in your native language.\n\nThank you for your cooperation and understanding. We look for ward to your successful registration and participation in the conference.\ n\n\n\nStep 1: Select Ticket based on preferred Examination location\n\nOv er the past several years\, our clinical team has worked with extraordinar y dedication to bring the Dragonfly study to this stage. Each year\, along side our international CTNNB1 conference\, we organize clinical examinatio n days where families can have their children assessed as part of the stud y. To reduce costs and enable broad participation\, our entire clinical te am has traditionally volunteered their time during these examination days\ , working over multiple days without compensation. For clinical examinatio ns conducted once per year during the conference\, the medical team has ag reed to continue providing their work on a voluntary basis.\n\nAs the Drag onfly Study has expanded internationally\, it has become unsustainable to ask the clinical team to work for free across multiple locations throughou t the year. For this reason\, the CTNNB1 Foundation must cover costs of fl ights and accommodation for clinicians and their compensations.\n\nOngoing participants\n\nFor families whose children have already participated in at least one Dragonfly NHS examination\, the CTNNB1 Foundation will cover expenses related to the study. \n\nFamilies are asked to make a €100 co ntribution per annual visit\, where applicable\, to confirm their appointm ent and ensure attendance.\n\nThis contribution is required because\, in p revious years\, examination slots were reserved but not used\, despite sig nificant effort by the medical team to attend.\n\nNew participants\n\nFor families joining the Dragonfly Study for the first time\, the required con tribution depends on:\n\n The study location\n Whether the site is alrea dy externally funded\n The need to cover travel and accommodation for the clinical team\n\nDue to a significant slowdown in donations to the CTNNB1 Foundation\, new participant contributions are necessary to enable expans ion of the study and acceptance of additional children.\n\nLocation-specif ic funding notes\n\n Australia (Sydney): The site is fully funded by UNSW Sydney.\n Canada (Québec): Clinical examinations are conducted at CHU d e Québec – Université Laval.\n\n The €990 contribution reflects the contracted cost per patient for the first visit.\n For each subsequent a nnual visit at CHU de Québec\, the examination cost will be €740.\n\n\n United States (Boston):\n- Hotel: Homewood Suites by Hilton Boston Seapo rt District\n- Address: 670 Summer St\, Boston\, MA 02210\, United States\ n\nCurrent capacity allows examinations only for returning participants.\n Accepting new participants requires covering additional costs for:\n\n Me dical and psychological assessments\n Travel and accommodation for an exp anded clinical team\n\n\n Slovenia (Ljubljana):\nFor new participants\, a s the medical team is locally based\, families are asked to cover only the direct costs related to clinical examinations.\n\nImportant note on futur e visits\n\nThe contributions listed below apply only to the first year of participation. Once a child is enrolled in the Dragonfly Study\, the same annual contribution (€100 per yearly visit\, where applicable) will app ly in subsequent years in all locations\, except at CHU de Québec – Uni versité Laval\, where study is being managed by the hospital.\n\n[table i d=6 /]\n\n \;\n\nStep 2: Fill in Registration Information\n\n Step 2A : Ongoing participant - prepare your Dragonfy ID code and review whether y ou have submitted previously any of the clinical data (e.g. EEG\, MRI\, et c).\n Step 2B: New participant - your Dragonfly ID will be given as soon as soon as you register and will be sent separately. \n\nStep 3: Submit b ooking\nClick "SUBMIT BOOKING" button at the end of the page.\n\nStep 4: P rovide payment details\nClick "Pay on Donorbox" button\, and enter the nec essary information to proceed with payment (in the next page after submiss ion of this form)\n\nStep 5: Provide payment details\nEnter the necessary information to proceed with payment (in the next page after submission of this form)\n\nStep 6: Add a donation (optional)\nYou can choose to include a donation to support our work.\n\nStep 7: Complete payment\n\n a) Selec t “Card” as the payment method.\n b) Enter your credit card details a nd complete the transaction.\n\nStep 8: Receive your tickets\nOnce your bo oking is confirmed\, you will receive your registration tickets via email. \n\n \;\n\nImportant information about registration and payment\nConfe rence tickets are considered a donation to the CTNNB1 Foundation.\nAs a no n-profit organization\, we are unfortunately unable to offer refunds for d onations.\nBy completing this registration\, you acknowledge that ticket p urchases are non-refundable. 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