MAPI Research Trust provides reliable, comprehensive and up-to-date information services to research scientists, pharmaceutical companies, and governmental health agencies involved in the fields of Patient-Reported Outcomes (PRO) and Epidemiology worldwide.
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HISTORY
history

In January 1995, MAPI CRO and Adelphi Group came together to found a non-profit service organization, unique in the field of Health-Related Quality of Life (HRQoL) research, the MAPI Institute.

The main objective of the Institute was to support and promote collaborative research initiatives in the field of health-related quality of life, involving academics, pharmaceutical companies, health authorities and international organizations such as the World Health Organization or the European Community.

For 9 years, the Institute followed its motto "Building the science of quality of life". Many projects were launched (ERIQA, IQOD, PROQOLID, the Cochrane PRO MG, etc) and hundreds of HRQoL measures were linguistically validated. In 1995 the business started with 5 people who quickly grew to 70 people by January 2004. Today a team of 95 people are dedicated to linguistic validation of PRO instruments for appropriate cross-cultural use and interpretation, leading the projects in close collaboration with a network of 310 experts in 92 countries. In response to our increasing activities and to reinforce our mission, as of 1 June 2004 MAPI Institute was divided into 2 separate entities:

MAPI Institute becomes a traditional company conducting linguistic validations of Patient Reported Outcomes instruments worldwide.


MAPI Research Trust, a non-profit organization, manages:

carre6 the educational programmes (ERIQA, the PROmats) and activities in the Cochrane Collaboration;
carre6 the worldwide information services (literature reviews, PROQOLID, distribution of PRO questionnaires, the Patient-Reported Outcomes Newsletter, etc.).

The MAPI Research Trust's activities receive continued sponsorship from MAPI Institute as well as from MAPI Group and other organizations.

In this way, we hope to facilitate the development of the Trust and the sponsorship of its activities by other organizations.

 

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New questionnaires distributed by MAPI Research Trust

ACCEPT (Chronic Treatment Acceptance Questionnaire)
MAPI SAS / Registrat MAPI (France)

ADRQL (Alzheimer Disease Related Quality of Life)
Black Betty S, Kasper Judith D and Rabins Peter V. - Johns Hopkins Medical INstitutions (USA)

Barthel Index questionnaire
The Maryland State Medical Society - MedChi (USA)

ESS (Epworth Sleepiness Scale) 
Murray W. Johns (Australia)

FIRST (Fibromyalgia Rapid Screening Tool)
Serge Perrot & Didier Bouhassira (France)

PDSS-2 (Parkinson's Disease Sleep Scale)
Ray Chaudhuri (UK) & Claudia Trenkwalder (Germany)

Skindex questionnaire 
Mary-Margaret Chren (USA)

TRIM-D and TRIM-D Device (Treatment Related Impact Measure for Diabetes)
Novo Nordisk (Denmark)