The selection of #PatientReportedOutcomes and other #ClinicalOutcomeAssessments requires organization, preparation, and a good understanding of all the steps and associated risks. To help sponsors develop efficient #COA and #eCOA strategies while anticipating operational challenges, the Mapi Research Trust team of experts is constantly working to develop free support tools: whitepapers, webinars, blog posts, publications and other resource documents. Access these tools at https://lnkd.in/ephbcFY4
À propos
Mapi Research Trust is a non-profit organization facilitating the access to Clinical Outcomes Assessments (COAs) for the entire scientific community. Also known as instruments, questionnaires, measures, scales or tests, COAs allow the measurement of the impact of diseases and treatments on patients’ quality of life. With more than 30 years of experience in the field of patient-centered outcomes and long-lasting collaborations with COA developers and copyright holders, Mapi Research Trust has developed comprehensive expertise at each step of the patient-centric endpoint strategy. Pre-eminent source of information on COAs, the online platform ePROVIDE™ centralizes Mapi Research Trust's services and databases on COAs (PROQOLID™), claims (PROLABELS™) and guidance (PROINSIGHT™). Visit https://mapi-trust.org/ to learn more. Visit ePROVIDE: https://eprovide.mapi-trust.org/
- Site web
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https://mapi-trust.org/
Lien externe pour Mapi Research Trust
- Secteur
- Services de recherche
- Taille de l’entreprise
- 51-200 employés
- Siège social
- Lyon
- Type
- Non lucratif
- Domaines
- PROQOLID, PROLABELS, PROINSIGHT, Patient-Reported Outcome Assessments, Patient-Reported Outcome Measures, Patient questionnaires, ePROVIDE, Clinical Outcome Assessments, eCOA, Patient-Centered Outcomes, Patient Voice, Quality of life, Questionnaire licensing, Questionnaire distribution, COA library, COA databases, COA endpoint strategies, COA regulatory guidance et Clinical research and practice
Lieux
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Principal
27 rue de la Villette
69003 Lyon, FR
Employés chez Mapi Research Trust
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Frederique Boucher
Account Executive chez Mapi Research Trust, PMP®
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Silvia Dibenedetto
Outcomes Researcher / Project Manager at Mapi Research Trust
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Laure-Lou Perrier
Director, COA Knowledge and Technology Management at Mapi Research Trust
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Sonia BOTHOREL
Managing Director | Clinical Research | Patient Centricity | Non executive Board Member
Nouvelles
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Searching for information on the effects of psychoactive drugs on sleep and awakening? Our on-demand webinar on the Leeds Sleep Evaluation Questionnaire (LSEQ) is for you. Watch as Dr Neil Stanley gives an overview of the LSEQ development and validation, its purpose and objective, its scoring procedure and its 4 domains: - Ease of getting to sleep (GTS) - Perceived quality of sleep (QOS) - Ease of awakening from sleep (AFS) - Integrity of behavior following wakefulness (BFW). Developed by Prof Ian Hindmarch, the LSEQ is one of the most popular measures for psychopharmacological research into subjective aspects of #sleep throughout the world. Watch the recording: https://lnkd.in/exv6N2RG #COAs #clinicaloutcomeassessments #QualityofLife
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Patient-Reported Outcomes, or PROs, are a critical component in the development of patient-centered treatments as they capture the full picture of a patient's experience with a condition or its treatment. In our latest blog, we provide insight on these measures, the different reasons why they should be considered in clinical trials, and the challenges and considerations when implementing PROs. Read the blog: https://lnkd.in/gBdinh8d #PROMs #Patientcentricity #patientvoice #COA
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Save the Date: From October 13-16 Mapi Research Trust will attend the ISOQOL - International Society for Quality of Life Research conference in Cologne, Germany. Mark your calendars for two key events: 1) Our reception for COA developers and copyright holders - Monday 14 October at 7:15pm. Pre-register now. 2) The plenary session “Broaden the scope: health outcomes assessment beyond PROs” - Wednesday 16 October at 1:50pm. We will discuss the challenges and opportunities arising from digitally measured COAs. Learn more https://lnkd.in/einFN4qe #COAs #clinicaloutcomeassessments #QualityofLife #eCOA
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Our collaborator Céline Desvignes-Gleizes 🧭 attended the 6th EURO-NMD European Reference Network for Rare Neuromuscular Diseases Translational summer school in Leiden, Netherlands where she was invited to host a discussion on PROM development in neuromuscular diseases. This subject raised a lot of interest and interactions with an active audience. A warm thank you to EURO-NMD European Reference Network for Rare Neuromuscular Diseases and TREAT-NMD for this invitation. Mapi Research Trust is proud to contribute to facilitating the clinical development of therapies for NMDs. Find in-depth information on NMD-specific PROMs: https://lnkd.in/e4K-UG8a #raredisease #PROMs
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Are you using #COAs in your clinical studies? Do you sometimes struggle to identify the authority granting permission for the use of a #ClinicalOutcomeAssessment? Read our whitepaper for useful tips and information to: - Help identify the copyright holder through a rigorous due diligence process - Mitigate the risks of infringement and misuse in clinical research and practice. Download the whitepaper now: https://lnkd.in/eZ6fdnkY #COAs #clinicaloutcomeassessments #eCOA #clinicaltrials #COAlicensing
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Are you looking for ways to streamline and optimize your eCOA implementation? The recorded session of our webinar “eCOA licensing & screenshot review: Best practices for faster approvals” is now available. Learn how eCOA licensing and screenshot review process can be successfully achieved within planned timelines for clinical trials. Watch the replay: https://lnkd.in/e2h7n5f2 #ePRO #DCT #decentralizedtrials #clinicaltrials #patientcentricity #COAs With Aisling Curran, Jack Hannigan and Livia Lai
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Selecting fit-for-purpose COAs for your clinical trials is a challenging and complex process. Mapi Research Trust can help you. Our database PROQOLID™ describes more than 6,800 Clinical Outcome Assessments with advanced and comprehensive information: Contact information and conditions of use, review copies, list of available translations and e-versions, domains covered, scoring, administration mode, recall/observation period, COA development information, COA validation information... This valuable information is available for you to optimize and facilitate your COA selection. Learn more https://lnkd.in/ehK8AXmt #COAs #ClinicalOutcomeAssessments #PROMs #ObsRO #ClinRO #eCOA #ePRO
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Did you know that 2,300 EMA- and FDA-approved drugs and devices have used COAs as an endpoint? And our PROLABELS™ database includes them all. By easily identifying other sponsors’ EMA- and FDA-approved drugs' COA endpoint strategies, PROLABELS™ supports you in developing a tailored and successful patient-centric endpoint strategy. Let's work together to bring more patient-centred treatments to market. Learn more: https://lnkd.in/ebaXANeq #COA #PROMs #ObsRO #ClinRO #PerfO #eCOA #patientcentricity #patientcentered #patientvoice #clinicaltrials #clinicalstudies
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We are in Basel today, getting ready for tomorrow's #DigitalBiomarkerSummit -- if you're here, we'd love to meet! Sonia BOTHOREL, Alexandre Malouvier and Sergio García are looking forward to discussing how selecting the right measures and endpoints leads to more effective and efficient patient-centered trials, and how ICON plc and Mapi Research Trust can support you in the process. Message our experts to set up a meeting.
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