About PROQOLID™

Objectives

The success of Patient-Centered Outcomes Research depends a great deal on the choice of appropriate Clinical Outcome Assessments (COAs). They should be selected by the domains they measure as well as the populations and the therapeutic areas they cover. Practical issues such as the availability of translations, copyrights, and access to instruments are also important considerations.

The PROQOLID™ Database was created in 2002 by Mapi Research Trust in view of providing a tool for a better knowledge, a relevant use of COAs, and to extend access to Patient Centered Outcomes resources for the scientific community.

Database Content and Information Sources

PROQOLID™ is supplied exponentially with new instruments throughout the year, based on recommended sources such as FDA (The U.S. Food and Drug Administration), EMA (European Medicines Agency), and Research and Development scientific community.

It mainly focuses on the original COAs developed: it provides descriptive information on COAs as well as descriptions of COAs related to the original (if relevant). The adequacy of the study methodology and the psychometric properties are not evaluated.

The COAs presented in PROQOLID™ may have specific conditions of use and, if available, copies of the COAs are presented for review purposes only.

PROQOLID™ offers two levels of access:

• A free access level corresponding to a basic informative page and available to all users at no charge
• A member access level available to users who subscribe for PROQOLID™. A username and password are required to access this level.

To view a full PROQOLID page (including free level access and member access): Go to search and type "KOOS".

Note: The access provided by PROQOLID™ does not constitute a license to use the COAs. PROQOLID™ does not provide copies of the COAs. In some cases, PROQOLID™ may provide review copies of COAs for information purposes only. Should users of PROQOLID™ wish to use a COA described in PROQOLID™, users shall contact the copyright holder of the COA and comply with the conditions of use of the COA.

Results Display

The display of each access level is summarized below.

Free Access Level

The free access level presents basic information:

• Name of  authors/developers
• Copyright notice
• Objective
• Therapeutic area
• Therapeutic indication
• Type of COA
• Original language(s) in which the COA was developed
• Bibliographic references used for the description of the COA in the database.

Member Access Level

The member access level presents a greater degree of information on the instruments:

• Contact information
• Conditions of use (including contact details of the person in charge of permission if the COA is not free of use)
• Review copy if available
• List of available translations as well as the related bibliographic references
• E-versions
• Characteristics: concepts of interests covered by the COA, number of items, population of intended use, recall period, time of completion, and administration mode
• Domains covered
• Scoring: response options, way of scoring, score direction
• Content validity documentation: information regarding the development of the COA
• Measurement properties: reliability, clinical validity and ability to detect change as measured in the original validation study of the instrument

In addition to these two levels, a tab named Related COA instrument facilitates browsing in PROQOLID™.

COAs distributed by Mapi Research Trust

COAs distributed by Mapi Research Trust include the following additional information:

• Access fees requested for the use of the instrument
• Downloadable user agreements to be signed and,
• Downloadable review copies of the instrument (which are for review purpose only).