About ProQolid
Background and objectives | ||
The success of Quality of Life (QOL) and Patient Reported Outcome (PRO) studies depends a great deal on the choice of appropriate instruments. They must be selected according to the domains they measure and the populations and pathologies for which they are designed. Practical issues, such as the availability of different translations, copyrights, and access to instruments are also major criteria in the choice of instruments. From these observations, the Quality of Life Instruments Database (QOLID) project was initiated by Mapi Research Institute to provide all those involved in health care evaluation with a comprehensive and unique source of information on PRO and QOL measures available through the Internet. In collaboration with Dr. Marcello Tamburini (Director, Unit of Psychology, National Cancer Institute, Milan, Italy), the developer of the QLMed.org web site, QOLID was launched at the beginning of 2002. It is currently managed by Mapi Research Trust and was renamed ProQolid, short for “Patient-Reported Outcome and Quality of life Instruments Database” in January 2005. Through the structured presentation of synthesized, reliable and constantly updated data on PRO instruments, the ProQolid database aims to:
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ProQolid content | ||
The information on the ProQolid website is structured in two levels:
This level is available to all visitors at no charge. For each instrument, it provides the following brief and descriptive information:
a: the term "pathology" refers to a large therapeutic area and can cover several diseases. On the other hand, the term "disease" refers to a specific, precisely defined condition.
b: this field describes the target population of the instrument as selected by the following descriptors:
c: this category refers to the major Patient-Reported Outcome (PRO) domains to which each instrument belongs. These include:
d: the following modes of administration may be cited:
e: a database is created by collecting and pooling the instrument's data from national and international studies.
f: the translations may not have undergone a full linguistic validation process. Please check status of translations with Mapi Research Trust / the developers / copyright holders / distributors
This advanced level, which is accessible to subscribers only, presents a greater degree of practical information on the instruments and, when available, includes the review copy of the instrument, its translations and the user manual:
To facilitate the researcher’s access to information on available datasets, we aim to identify, list and describe existing PRO databases created from national or international clinical studies. By making this available, data interpretation can be improved through access to comparative data from studies using the same or different PRO instruments. The focus of the resulting collection is to provide practical information available on the Internet and not access to the data itself. * All instruments described in the database are updated at least once a year in direct collaboration with their developers
* New information is provided on each instrument
* New instruments are added each year.
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How to search for instruments? | ||
The instruments listed in ProQolid are classified according to different criteria to enable more efficient searches. The different lists are accessible from the Search page of ProQolid. Click on the free access or restricted access icon of the Home page to display the Search page.
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General policy | ||
Mapi Research Trust is a non-profit organization that promotes Patient Reported Outcomes (PRO). By developing ProQolid, we provide a tool that improves the knowledge and thereby the relevant use of PRO instruments and also enlarges access to PRO resources for all those involved in this field. For this reason, a significant part of ProQolid has been made accessible to all users free of charge. However, in the aim to further develop and improve the database by adding more instruments and/or additional information on each instrument, a financial participation is required in order to access ProQolid advanced level. This financial participation, in the form of a yearly subscription fee, will enable us to further develop this database. By subscribing to ProQolid , you are supporting the continuous collection and update of PRO resources. |
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How do I subscribe to PROQOLID's advanced level? | ||
Yearly subscriptions are offered to students, universities, hospitals, institutions, non-profit organizations, as well as pharmaceutical and profit-making companies. Subscriptions offer full access to ProQolid for one year. Access is granted through the allocation of personal passwords for each subscription. To subscribe to ProQolid, you may either:
ISOQOL members benefit from a new arrangement with Mapi Research Trust
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