Patient-reported outcome and quality of life instruments database (PROQOLID): Frequently asked questions

被引：63

作者：

Emery M.-P. ^{[1
]}

Perrier L.-L. ^{[1
]}

Acquardo C. ^{[2
]}

机构：

[1] Mapi Research Trust, 69003 Lyon

[2] Mapi Research Institute, 69003 Lyon

来源：

Health and Quality of Life Outcomes | / 3卷 / 1期

关键词：

Database; Health-related quality of life; Instruments; Internet; Patient-reported outcomes; ProQolid; Quality of life; Questionnaires;

D O I：

10.1186/1477-7525-3-12

中图分类号：

学科分类号：

摘要：

The exponential development of Patient-Reported Outcomes (PRO) measures in clinical research has led to the creation of the Patient-Reported Outcome and Quality of Life Instruments Database (PROQOLID) to facilitate the selection process of PRO measures in clinical research. The project was initiated by Mapi Research Trust in Lyon, France. Initially called QOLID (Quality of Life Instruments Database), the project's purpose was to provide all those involved in health care evaluation with a comprehensive and unique source of information on PRO and HRQOL measures available through the Internet. PROQOLID currently describes more than 470 PRO instruments in a structured format. It is available in two levels, non-subscribers and subscribers, at www.proqolid.org. The first level is free of charge and contains 14 categories of basic useful information on the instruments (e.g. author, objective, original language, list of existing translations, etc.). The second level provides significantly more information about the instruments. It includes review copies of over 350 original instruments, 120 user manuals and 350 translations. Most are available in PDF format. This level is only accessible to annual subscribers. PROQOLID is updated in close collaboration with the instruments' authors on a regular basis. Fifty or more new instruments are added to the database annually. Today, all of the major pharmaceutical companies, prestigious institutions (such as the FDA, the NIH's National Cancer Institute, the U.S. Veterans Administration), dozens of universities, public institutions and researchers subscribe to PROQOLID on a yearly basis. More than 800 users per day routinely visit the database. © 2005 Emery et al., licensee BioMed Central Ltd.

引用

页数：6

共 8 条

[1]

Wilke R.J., Burke L.B., Erickson P., Measuring treatment impact: A review of patient-reported outcomes and other efficacy endpoints in approved product labels, Control Clin. Trials, 25, pp. 535-552, (2004)

[2]

Acquadro C., Berzon R., Dubois D., Leidy N.K., Marquis P., Revicki D., Rothman M., PRO Harmonization Group: Incorporating the patient's perspective into drug development and communication: An ad hoc task force report of the Patient-reported Outcomes (PRO) Harmonization Group meeting at the Food and Drug Administration, February 16, 2001, Value Health, 6, pp. 522-531, (2003)

[3]

Assessing Treatment Impact Using Patient-Reported Outcomes (PROs): Challenges in Study Design, Conduct and Analysis, Patient-Reported Outcomes Newsletter, 3, pp. 1-16, (2005)

[4]

Muller-Buhl U., Engeser P., Klimm H.D., Wiesemann A., Quality of life and objective disease criteria in patients with intermittent claudication in general practice, Fam. Pract., 20, pp. 36-40, (2003)

[5]

Bolling-Sternevald E., Lauritsen K., Talley N.J., Junghard O., Glise H., Is it possible to predict treatment response to a proton pump inhibitor in functional dyspepsia?, Aliment. Pharmacol. Ther., 18, pp. 117-124, (2003)

[6]

Eton D.T., Fairclough D.L., Cella D., Yount S.E., Bonomi P., Johnson D.H., Eastern Cooperative Oncology Group: Early change in patient-reported health during lung cancer chemotherapy predicts clinical outcomes beyond those predicted by baseline report: Results from Eastern Cooperative Oncology Group Study 5592, J. Clin. Oncol., 21, pp. 1536-1543, (2003)

[7]

Chassany O., Sagnier P., Marquis P., Fulleton S., Aaronson N., Patient Reported Outcomes and Regulatory Issues: The Example of Health-related Quality of Life - A European Guidance Document for the Improved Integration of HRQL Assessment in the Drug Regulatory Process, Drug Inf. J., 36, pp. 209-238, (2002)

[8]

Revicki D.A., Leidy N.K., Geneste B., Recommendations for evaluating the validity of quality of life claims for labeling and promotion, Value Health, 2, pp. 113-127, (1999)

← 1 →