Frequently Asked Questions
Permission to use the LupusQoL©
The University of Central Lancashire and East Lancashire Hospitals NHS Trust is the copyright holder for the LupusQoL©. The instrument may not be reproduced or translated in whole or in part without the express written permission of the copyright holder.
Additionally, we ask users to notify us when they publish or present LupusQoL© data so that this information can be added to our web site.
Licensing Fees
The LupusQoL© is available to academic researchers without fees. Pharmaceutical companies wishing to use the instrument will be charged five pounds per patient enrolled in their study. Fees are to be paid by check, payable to: “East Lancashire Hospitals NHS Trust”, and sent to:
Dr. Lee-Suan Teh
Department of Rheumatology
Admin Block Level 1
Royal Blackburn Hospital
Haslingden Road
Blackburn BB2 3HH
United Kingdom
Tel: 01254 734428 (Secretary)
Modifying questionnaire wording
The questionnaire cannot be called the LupusQoL© if questions or responses are changed or questions are added or deleted.
Administration
The LupusQoL© was originally developed in UK English and validated for paper administration. Neither the original UK English nor any of the translations have been adapted for PDA, web, or IVR administration.
Reformatting the questionnaire
The LupusQoL© may be reformatted (e.g., different font, boxes, or blanks) to make it consistent with other instruments used in a study.
Translations
The LupusQoL© has been translated into 77 languages for use in 51 countries through a reiterative linguistic validation process consisting of several independent translations, back translations, expert review of the back translation, local review by users, and cognitive debriefing. For a complete description of the linguistic validation process click here. Existing translations can be obtained by contacting:
Corporate Translations, Inc.
77 Hartland Street
East Hartford, CT 06108
Tel: 860-727-6000
Fax: 860-727-6001
E-mail: LupusQoL