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Mind the gap: The need for gender-specific outcome measurement
Women experience significantly more years of poor health than men due to delayed diagnoses and mischaracterized symptoms, despite living longer on average. This health disparity is rooted in systemic gaps in medical research and clinical trial design, particularly in how health outcomes are measured through Clinical Outcome Assessments (COAs).
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Friedreich’s Ataxia Research Alliance entrusts Mapi Research Trust with the management of their COAs
Mapi Research Trust’s catalog of Clinical Outcome Assessments now includes 5 new questionnaires developed for Friedreich’s ataxia (FA), a rare genetic and progressive neuromuscular disease. FA is life-shortening and affects an estimated 15,000 individuals worldwide.
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The authors of the PANSS choose Mapi Research Trust as their exclusive licensing partner
Effective March 3rd, 2025, the authors of the Positive and Negative Syndrome Scale for Schizophrenia (PANSS) appointed Mapi Research Trust as their exclusive licensing and distribution partner.
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QOL Technologies Ltd. partners with Mapi Research Trust for the management of their COAs
Starting in November 2024, all requests for use shall be sent directly to Mapi Research Trust via the ePROVIDE platform.
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Announcing Outcome Measures: A Collection of ICON Services to Advance Patient-Centered Clinical Trials
Mapi Research Trust’s sponsor ICON launched a new capability: Outcome Measures, an end to end service that supports sponsors in the identification, selection and implementation of measures that matter to patients.
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The South London and Maudsley NHS Foundation Trust partners with Mapi Research Trust
The South London and Maudsley NHS Foundation Trust entrusts Mapi Research Trust with the exclusive distribution and licensing of the SDS-Gossop and the SOWS-Gossop.
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Rare Disease Day: raising awareness and improving patients’ quality of life
Learn about initiatives to improve quality of life of people with rare diseases and to make their voices heard in clinical research.