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PROQOLID

In 2012, the Patient-Reported Outcome and Quality of Life Instruments Database (PROQOLID) Celebrates a Major Feat: Its 10th Anniversary!

Martine Caron, Laure-Lou Perrier, Marie-Pierre Emery

MAPI Research Trust, Lyon, France

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Keywords: databases, Patient-Reported Outcomes

This year marks the 10th anniversary of PROQOLID, the world’s first and still the only comprehensive database dedicated to
Patient-Reported Outcomes and Quality of Life Instruments.
MAPI Research Trust (MRT) originally launched the database in 2002 as QOLID (see Figure 1)—describing only 313 instruments.
It was renamed PROQOLID in 2005 to reflect the FDA’s shift in terminology from Quality of Life (QOL) to Patient-Reported
Outcomes (PRO) (see Figure 2). The basis of the database was the randomly collected information available at MRT and
information collected by the late Marcello Tamburini of the National Cancer Institute in Milan, Italy.

PROQOLID currently contains detailed information on over 710 instruments and is constantly growing. PROQOLID offers a free level that provides essential information: the author’s name, the instrument’s objective, mode of administration and a list of existing translations.
In addition, database subscribers have direct access to review copies of the instruments, conditions of use, descriptive
information, content validity documentation, measurement properties, bibliographic references, regulatory use information,
scoring manuals, authors’ contact information, and links to useful websites—all consistent with current FDA terminology. No
wonder PROQOLID has become THE reference source for PRO and Clinician-Reported Outcomes (ClinROs) information and currently has nearly 900 regular subscribers (64% are pharmaceutical companies, 34% from academia, and 2% from health authorities). Over 8,000 visitors freely consult the database every month.
To celebrate PROQOLID’s decade of service we have revised the website and added numerous new features. On the technical side, you will find a new Google-type search engine for more user-friendly browsing. Very soon all users will be able to search
for instruments by the domain assessed. They will also have direct access to contact information, review copies, and user
agreements for all the instruments distributed by MAPI Research Trust. We have also added the main bibliographic references to PROQOLID’s free level (see Figure 3).
Honoring PROQOLID’s anniversary milestone, MRT will hold special events throughout the year. Event information will be posted on the PROQOLID website (www.proqolid.org).

For more information, please contact:
• Andrea Murison This e-mail address is being protected from spam bots, you need JavaScript enabled to view it (North America)
• Marie-Pierre Escanez-Virieux This e-mail address is being protected from spam bots, you need JavaScript enabled to view it (rest of the world)

 


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