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SUMMARY:2nd MULTI-STAKEHOLDER MEETING - Ensuring patient centricity in Osteogenesis Imperfecta research
DESCRIPTION:REMEDi4ALL is hosting our 2nd Multi-stakeholder Meeting (MS) – Ensuring patient centricity in Osteogenesis Imperfecta (OI) research.\n  \nJoin the MSM\nREMEDi4ALL invites all stakeholders in the OI research community to join us for a day of learning\, discussion\, and inspiration. \nWe welcome clinicians\, academics\, patients and patient representatives\, pharmaceutical companies\, regulators\, payers\, health economists and all interested in OI and Rare Bone Diseases research. Together\, we will discuss and develop patient centric approaches to research and medicines development for OI. \nOur MSM will: \n\nShare information and advance learning\, in a pre-competitive and cooperative setting\nDevelop constructive dialogue between all stakeholders\nFacilitate collaboration and knowledge exchange\nIdentify current hurdles and propose solutions to ensure patient centricity in OI research\nPublish and disseminate the meeting outcomes to a broader community\n\n The Power of Patients\nThe patient’s voice is at the heart of this meeting. The OI community and the REMEDi4ALL Patient Advocacy Group have played integral roles in shaping the content and format of this event. \nWe wanted to ensure that the patients’ perspectives\, experiences\, and preferences guide our discussions and are at the forefront of OI research and therapeutic development. Over the day\, you will hear from numerous patients\, patients representative and advocates. They will: \n\nShare their personal journeys of living with OI\, providing insights into the day-to-day challenges they face\, as well as the triumphs and setbacks they encounter.\nHighlight unmet medical needs within the OI community\nDiscuss patient-relevant research questions and identify research priorities\n\nPatients will have the opportunities to \n\nLearn about the recent advancements in medicines development in OI\nInitiate collaborations and partnerships with all stakeholders\nActively participate and engage in scientific discussions about OI\n\nPatient centricity will run as a core-narrative in all our sessions and panel discussions\, encouraging each stakeholder to consider the patient perspective in their current and future work. \nAgenda (might be subject to change)\nWEDNESDAY\, 12 JUNE 2024\n\n\n\n19.30/20.00\nArrival and Speakers Dinner at the Hotel\nBY INVITATION ONLY\n\n\n\n THURSDAY\, 13 JUNE 2024 (8.30 – 18.00 CEST)\n\n\n\n8.00 – 8.30\nRegistration\n \n\n\n8.30 – 8.40\nOpening Ceremony and Welcome\nClaudia Fuchs (EURORDIS) \nLeonardo Panzeri (AS.IT.O.I.) \nDonald Lo (EATRIS)\n\n\n\nOpening Speech\n\n\n\n8.40 – 9.00\nWhat does it mean living with OI?\nGem Turner\n\n\n\nSESSION 1: Multi-national strategies for Patient Advocacy in OI\nModerators: Claudia Fuchs\n\n\n\n9.00 – 9.10\nThe European Reference Network on rare bone diseases (ERN-Bond)\nLuca Sangiorgi (Istituto Ortopedico Rizzoli)\n\n\n9.10 – 9.20\nThe European Registries for Rare Bone and Mineral Conditions (EuRR-Bone)\nClaudia Finis (DOIG (German Ostogenesis Imperfecta Organisation) and Berlin Institute of Health at Charité)\n\n\n9.20 – 9.30\nPatient Engagement Initiatives in Rare Diseases: an Italian Perspective\nAnnalisa Scopinaro (UNIAMO – Federazione Italiana Malattie Rare)\n\n\n9.30 – 9.45\nQ/A session\n\n\n\nPANEL DISCUSSION – Ask the Expert: How to become a Patient Advocate in OI?\nModerators: Marina O’Callaghan & Claudia Fuchs\n\n\n\nLightning talks: European and National Patient Engagement Activities in OI\n\n\n10.00 – 10.05\nStronger Together: OIFE’s Patient Engagement Initiatives\nAnna Rossi (OIFE)\n\n\n10.05 – 10.10\nIntroduction to Patient Engagement Activities in Italy\nSimona Paveri (AS.IT.O.I.)\n\n\n10.10 – 10.15\nIntroduction to Patient Engagement Activities in Norway\nInger-Margrethe Stavdal Paulsen (Norsk Forening for Osteogenesis Imperfecta)\n\n\n10.15 – 10.20\nIntroduction to Patient Engagement Activities in Spain\nMiguel Rodríguez Molina (Asociación Nacional Huesos de Cristal OI España – AHUCE)\n\n\n10.20 – 10.25\nBrittle Bone Society – Support that matters most\nPatricia Osborne (Brittle Bone Society – BBS)\n\n\n10.25 – 11.00\nPanel Discussion – Ask the Expert: How to become a Patient Advocate in OI?Panelists: Gem Turner\, Annalisa Scopinaro\, Anna Rossi\, Miguel Rodríguez Molina\, Patricia Osborne\, Emilija and Dace Liepina\, Marie Holm Laursen \n\n\n\n11.00 – 11.30 Coffee Break \n SESSION 2: Initiatives in the OI community \nModerators: Anna Rossi & Luca Sangiorgi \n\n\n\n11.30 – 11.40\nThe Impact Survey Initiative\nOliver Semler (University of Cologne)\n\n\n11.40 – 11.50\nAdult Health Initiative\nStuart Ralson (University of Edinburgh)\n\n\n11.50 – 12.00\nCare4BrittleBones Initiative Key4OI\nLida Zhytnik (Amsterdam UMC)\n\n\n12.00 – 12.15\nQ/A session\n\n\n\n SESSION 3: Current Treatment Options in OI – a multistakeholder perspective\nModerators: Anna Rossi & Luca Sangiorgi \n\n\n\n12.20 – 12.40 \nIntroduction to different treatment options and approaches for OI\nNick Bishop (The University of Sheffield)\n\n\n\n12.40  – 14.00 Lunch Break \nCONTINUATION SESSION 3 \n\n\n\nLightning talks: Current ongoing clinical trials with specific focus on challenges and opportunities of Patient Engagement\n\n\n14.00 – 14.10 \nREMEDi4ALL MOI-A Study\nJudith Cohen (University of Hull)\n\n\n14.10 – 14.20\nTOPaZ trial\nStuart Ralson (University of Edinburgh)\n\n\n14.20 – 14.30\nThe ORBIT  Phase 2/3 study: a collaborative design to study outcomes in OI\nLuigi Picaro (Mereo BioPharma) \n\n\n14.30 – 14.40 \nBOOSTB4 Trial: Boost Brittle Bones Before Birth\nCecilia Götherström (Karolinska Institute)\n\n\n14.40 – 14.55 \nQ/A session\n\n\n\n SESSION 4:”Patient-centered clinical trial design”\nModerators: Nick Bishop & Claudia Fuchs \n\n\n\nLightining talks: Patient perception and experience in clinical trials\n\n\n15.00 – 15.10\nPatient Perspective as a Teenager\nEmilija and Dace Liepina\n\n\n15.10 – 15.20\nPatient Experience on the ASTEROID Trial\nMarie Holm Laursen\n\n\n15.20 – 15.30 \nPatient Engagement activites within the R4ALL demonstrator (MOI-A Study)\nMarina O’Callaghan\n\n\n15.30 – 15.45 \nQ/A session\n\n\n\n15.45– 16.15 Coffee Break \nPANEL DISCUSSION – Innovative outcome measures in clinical trials\nModerators: Inger-Margrethe Stavdal Paulsennger & Claudia Fuchs  \n\n\n\nLightning talks: Quality of Life assessment (QoL) and patient related innovative outcome measures in clinical trials in OI\n\n\n16.15 – 16.25\nQoL assessment in OI\nNick Bishop (The University of Sheffield)\n\n\n16.25 – 16.35 \nDeveloping patient related outcome measures on mobility in rare bone disorders\nLuca Sangiorgi (Istituto Ortopedico Rizzoli)\n\n\n16.35 – 16.45\nRegulatory perspective on innovative outcome measures – how can patients contribute?\nVioleta Stoyanova-Beninska (Committee for Orphan Medicinal Products)\n\n\n16.45 – 16.55 \nPatient perspective on innovative outcome measure – how to advocate?\nInger-Margrethe Stavdal Paulsen (Norsk Forening for Osteogenesis Imperfecta)\n\n\n17.00 – 17.40 \nPanel Discussion – innovative outcome measures in clinical trials  \nPanelists: Nick Bishop\, Stuart Ralson\, Luigi Picaro\, Cecilia Götherström\, Oliver Semmler\, Lida Zhytnik\, Violeta Stoyanova-Beninska\n\n\n\n\n\n\n17.40 – 17.50\nPatient engagement in early Health Technology Assessment (eHTA)\nZsuzsanna Petyko (Syreon Research Institute)\n\n\n17.50 – 18.00\nWrap Up and Closing Remarks\nClaudia Fuchs (EURORDIS)\n\n\n\n18.00 Get Together \n FRIDAY\, 14 JUNE 2024 \n9.00 – 11.00 CEST\n\n\n\n9.00 – 11.00\nWorkshop on early Health Technology Assessment (eHTA)\nBY INVITATION ONLY \nDalma Hosszu (Syreon Research Institute)\n\n\n\n*Please note that only meals (lunch\, coffee breaks and get-together) are covered by the event organisers. Participants need to arrange their own travel and accomodation. \n Download the programme here. \nDownload the event flier here. \nSpeakers\nClick here to see the complete list of speakers and their bios. \nConfirmed speakers: \n \n  \nOrganisers\nOrganised within the REMEDi4ALL project in collaboration with EURORDIS – Rare Disease Europe\, Beacon for Rare Diseases\, Associazione Italiana Osteogenesi Imperfetta – AS.IT.O.I.\, Osteogenesis Imperfecta Federation Europe – OIFE\, European Reference Network on rare bone diseases – ERN BOND. \n \n  \nRegistration\nThis event will be a hybrid event\, hosted both online and in-person (Bologna\, Italy). Registration closes on 31 May\, 2024. \nRegister here
URL:https://remedi4all.org/event/2nd-multi-stakeholder-meeting-ensuring-patient-centricity-in-osteogenesis-imperfecta-research/
LOCATION:Savoia Hotel Regency\, Via del Pilastro\, 2\, Bologna\, Italy
ATTACH;FMTTYPE=image/jpeg:https://remedi4all.org/wp-content/uploads/2024/03/Slide2.jpg
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