A network of experts with decades of experience
We’ve built lasting relationships with academics, pharmaceutical partners and an international network of health outcomes experts. We collect and process information in the field of Patient-Centered Outcomes (PCO), accomplishing the following as a service to the PCO community
- An ever growing network of experts comprising of 3,500+ researchers and representatives of health authorities worldwide
- The online publication of the Patient Reported Outcomes (PRO) Newsletter
- The official distribution of 800+ COAs, their translations and electronic versions
- The development of unique and specific databases in the field: PROQOLID™, PROLABELS™, and PROINSIGHT™ counting major pharmaceutical companies as subscribers
- Processing of 20,000+ information requests per year (COAs, translations, methodologies, copyrights, conditions of use etc.)
- Publication of articles in peer-reviewed journals
- Oral, poster and workshop presentations at conferences
Non-profit initiatives from Mapi Research Trust
Free access to COAs distributed by Mapi Research Trust for academic researchers
Mapi Research Trust supports thousands of independent and academic research programs every year by offering not-funded academic researchers free access to all the COAs from its catalog of distribution: original versions, translations and electronic versions. Funded academic researchers benefit as well thanks to reduced fees. Have a look at our catalog of COAs: https://eprovide.mapi-trust.org/catalog
Partnership with Orphanet-INSERM & EU grant in the rare diseases field with the ERICA Consortium
In 2020, Mapi Research Trust (MRT) and Orphanet-INSERM - portal for rare diseases and orphan drugs - received the approval for a 4-year EU grant in the rare diseases field with the ERICA consortium (European Rare disease research Coordination and support Action). The EU grant will support MRT’s, Orphanet-INSERM’s and ERICA’s joint effort to analyze and code the functional consequences of rare diseases and to identify a broad list of validated COAs that measure functional impacts. To learn more, go to: https://www.orpha.net/ and https://erica-rd.eu/
Cochrane PRO Methods Group
In 2001, Mapi Research Trust initiated the PRO Methods Group (PRO MG) within the Cochrane Collaboration and has sponsored its work ever since. The main objective of the PRO MG is to advise Cochrane reviewers about when and how to incorporate PROs into systematic reviews. To learn more, go to: https://methods.cochrane.org/pro/
Catherine Pouget Award
Mapi Research Trust is proud to offer the scientific community an opportunity to compete for an annual award for research that contributes to improvements in quality of life for the terminally ill. You will find more information about this award at: https://mapi-trust.org/about-us/catherine-pouget-award/
The European Regulatory Issues on Quality of Life Assessment (ERIQA) Project
Mapi Research Trust established the European Regulatory Issues on Quality of Life Assessment Project in 1997. Its goal was to establish principles and practice guidelines for the integration of Health Related Quality of Life (HRQL) outcomes in the regulatory process and was instrumental in bringing about the FDA’s PRO guidance in 2009. To learn more, go to: www.eriqa-project.com