FAQs

Do the EORTC have a voice activated script that can be use on telephone system?

Currently no, but we are working on developing a version that can be used in clinical trials and that will be provided to users in late 2017

Can we set up a contract for licence in mobile application?

At present we do not have our own electronic versions of our questionnaires available for use on mobile devices. EORTC will be developing an electronic version of its QLQ questionnaires soon, but in the meantime it is the responsibility of the requestor to arrange and manage migration of our questionnaires from paper format to electronic format. We are currently developing guidelines for migration, which will be published shortly. As with any use of our questionnaires, an agreement will need to be set up with EORTC for the use of the questionnaires in your study/trial, whether it employs the questionnaires in paper format or electronic format. For purely academic usage, contact justyna.mierzynska@eortc.be and for commercial usage contact cheryl.whittaker@eortc.be – in either case specifying that you wish to migrate to electronic version so that the correct permission clause can be inserted into the agreement that you will need to sign. We would advise also that you keep an eye on our website for developments in this area – e.g. for the migration guidelines which are to be published shortly.

Can you help me with my study/trial/research project?

Generally the Quality of Life Department does not involve itself in external research projects. We receive numerous requests on a daily basis and it is impossible for us to design a trial, provide actual data-management or to perform analyses for free as a consultancy service. Neither do we take any responsibility for results obtained outside of the EORTC framework. Hopefully, the information provided on these FAQs will help you consider some of the basic issues in designing clinical trials and research projects. In some instances, we can offer consultancy services for a fee and requests for this should be initially directed to the Head of the Quality of Life Department, Dr Andrew Bottomley. 

Should you be interested in starting a new research project under the auspices of the EORTC Quality of Life Group or Department, please contact the Chairman of the Group or the Head of the Quality of Life Department.

How do I design a study with QoL?

There are 4 main steps to consider for the design of a QoL study:

  1. Determine your QOL Objective
    • Write down the specific question you want to answer. Take extra care to determine which specific QoL domains, what time periods and what type of changes/differences you are expecting to be relevant for your question.
  2. Choose an instrument
    • It should be a validated (i.e. reliable, valid, responsive, feasible ?) questionnaire in the trial population.
    • It should address the QoL domains that are essential for your hypothesis: global measures, disease-specific measures,and symptom checklists.
    • Check if appropriate translations are available.
  3. Select your assessment time points
    • Assessment schedule should closely reflect the objective.
    • Schedule should include at least a baseline (i.e. before treatment/randomization).
    • If comparing multiple arms: schedule should be identical/comparable between the arms.
    • Keep the patient in mind: do not overburden by collecting more than necessary.
  4. Develop an analysis plan
    • Analysis plan should reflect the objective.
    • Address issues of scale/domain selection, sample size, compliance, missing data, minimal clinically important difference and sensitivity analyses.

Note that objectives, instrument, assessment schedule and analysis techniques should be specified a priori. A good trial design, conduct, analysis and reporting is only possible if these aspects have been determined beforehand.

How may I obtain the QLQ-C30 and modules?

In order to obtain the QLQ-C30 and modules you need to ask for permission.

FOR ACADEMIC USE: This can be done via our download section. By completing the process you are authorised to use the questionnaire in that specific academic study. For each new study, you need to complete another request. There is no fee for academic or non-commercial users. By clicking on "Download questionnaire"/"Download module" on the relevant questionnaire page you will be able to fill in a request. You will receive an automated reply with the links where you can download the documents you have requested.

COMMERCIAL USE: Please note that if your study has commercial sponsorship you will be required to pay a fee dependent upon the number of patients in the study.  For further details for commercial use, please contact Cheryl Whittaker directly.

Which translations are available? In which languages is the QLQ-C30 available?

Details of available translations can be found on the relevant questionnaire page or by contacting the Translation Team Leader.

There is no translation available in the language I require. How do I go about getting one done?

More information on getting translations done can be obtained from the Translation Team Leader. The Translation manual can also be of help.

Does the EORTC have an official module for Leukaemia?

At present we are developing a module for chronic lymphocytic leukaemia (CLL). In the past, other modules may have been developed for Leukaemia and indeed other disease sites, but these are not in the formal repertoire of EORTC modules unless they are listed on our web site. If you are unsure if the module you need is a formal module, please see our Modules section for a list of our present modules.

 

Do I need permission to use the QLQ-C30 and the modules?

In order to be able to use the QLQ-C30 and modules you need to ask for permission. This can be done via our download process on the relevant questionnaire page.By completing the process you are authorised to use the questionnaire in that specific study. For each new study, you need to complete another request. There is no fee for academic or non-commercial users but if your study has commercial sponsorship you will be required to pay a fee dependent upon the number of patients in the study.

Do I have to register if I am an academic user?

You do, but this is a simple process as described above.