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Mapi Research Trust and Orphanet-INSERM are pleased to announce the ERICA Project
European Rare disease research Coordination and support Action The ERICA Project 2020 ended on a very enthusiastic and exciting note: Mapi Research Trust (MRT) and Orphanet-INSERM got the approval for...
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Webinar Summary Report – Authors’ interview: Patient Reported Outcome Assessments: Spotlight on the Quality of Life General (QGEN®) Survey, a one-minute alternative to the SF-36
To read the full interview please scroll down, or click here QGen -Author Interview For anyone who would like to experience the webinar, click here to register for the recording....
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Mapi Research Trust Announces New Distribution Partnership with Inflexxion, an IBH Company
Mapi Research Trust (MRT) is excited to announce a new partnership with Inflexxion, an Integrated Behavioral Health (IBH) Company, for the distribution of their clinical outcome assessments. Inflexxion and IBH...
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Recent Publication in the European Journal of Haematology – Co-Authored by Mapi Research Trust’s Sandra Desruol-Allardin and Isabelle Savre.
Patient‐reported outcome measures in studies of myelodysplastic syndromes and acute myeloid leukemia: Literature review and landscape analysis Reinhard Stauder, Jérémy Lambert, Sandra Desruol‐Allardin, Isabelle Savre, Lona Gaugler, Igor Stojkov, Uwe...
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A newly published article in the Orphanet Journal of Rare Diseases, co-Authored by Mapi Research Trust’s Isabelle Savre
“To what degree are orphan drugs patient-centered? A review of the current state of clinical research in rare diseases” Abstract Background Over the past 30 years, the healthcare industry has increasingly...
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Health related quality of life scores of typically developing children and adolescents around the world: a meta analysis with meta regression
Check out this meta-analysis by Nikki Ow and Nancy Mayo about the Pediatric Quality of Life Inventory, the PedsQL™ developed by Dr. James W. Varni. This review was conducted on...
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Mapi Research Trust Announces New Distribution Partnership with the Center for Environmental Therapeutics
Mapi Research Trust (MRT) is excited to announce a new partnership with the Center for Environmental Therapeutics (CET) for the distribution of its scales. The CET is an independent, non-profit...
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The patient’s voice in the evaluation of orphan drugs
This article is based on an issue panel given at the ISPOR 19th Annual European Congress (2016). To view the authors’ presentations, go to www.ispor.org/Event/ReleasedPresentations/2016Vienna#issuepanelpresentations. The patient’s voice in the...
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Assuring success from regulatory to global market access of rare disease treatments
We invite you to attend Mapi’s workshop entitled “Assuring Success from Regulatory to Global Market Access of Rare Disease Treatments” to be held at the World Orphan Drug Congress in...
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IQWIG’s systematic reviews of guidelines are now available in the PROINSIGHT™ database!
The PROINSIGHT™ database centralizes and summarizes published regulatory recommendations concerning the use of clinical outcome assessments (COAs) (cf. Glossary) to determine treatment benefit and to inform on drug approval and...
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The Journal of Patient-Reported Outcomes has published its first articles
The International Society for Quality of Life Research (ISOQOL) and Editors are proud to announce that Journal of Patient-Reported Outcomes, a new open access journal, has published its first articles. Read...
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A New Book! Reproducibility: A primer on semantics and implications for research
Discover a new publication by Kathleen Lohr Citation Pellizzari, E., Lohr, K., Blatecky, A., & Creel, D. (2017). Reproducibility: A primer on semantics and implications for research. (RTI Press Publication...
