EuroQol Experimental Version Registration

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The EuroQol Group Association (“Group”) owns several instruments designed to measure and value health. The EuroQol Research Foundation (“Foundation”) manages the intellectual property rights (“IP Rights”) of all instruments owned by the Group. The Foundation is a registered non-profit organization in the Netherlands and as part of the Foundation, the EuroQol Office is entitled to protect the IP Rights of EuroQol instruments (see the IP Protection Policy). This includes but is not limited to appointing research collaborators, negotiation terms and conditions for development and use, and serving as the single point of distribution of EuroQol instruments.


The Group is constantly working on further development of the existing instruments and developing new instruments. The following new instruments are currently under development:

The EQ-5D Bolt-on Toolbox is not a standalone instrument; a valid EQ-5D-5L license is required for the registration and use of the EQ-5D Bolt-on Toolbox. Please also complete the registration for the EQ-5D-5L here: https://registration.euroqol.org/.

Collaboration
The above mentioned instruments are not publicly available yet and are only shared with researchers who are willing to collaborate on the development of these instruments. Collaboration is possible on fundamental research to help the development of the instruments. The research performed by collaborators is not expected to generate findings with an immediate application.


Applicants can submit a request for collaboration by completing this registration form. Requests will be reviewed by the developer group of the instrument and may be accepted or rejected.


In case the applicant is accepted as a collaborator, the applicant may collaborate developer group of the instrument on the further development of the instrument. The collaborator will receive a Collaborator Status and will be required to sign legal documents.


Researchers are not allowed to distribute Experimental Versions beyond study sites participating in the study.


Publication and citation requirements
Separate written permission must be obtained if the researcher wants to display (parts of) and Experimental Version in a publication.
Experimental Versions must be clearly cited as "Experimental" in any research output.
Further guidance is provided in the EuroQol Citation Guidelines.


Sharing study results
By completing this registration form, applicant understands and accepts that study results will be shared with the developer group of the instrument upon request.


The collaboration with the developer group can include the following requests for data sharing:
  • Sharing combined datasets resulting from the project using the instrument with the developer group. The developer group may perform analyses on the collected data or;
  • Sharing analyses on the collected data resulting from the project with the developer group.
After anonymization, the developer group will use the information provided in EuroQol reports on Experimental Version usage. The developer group will contact you in case of important product notifications.


Future availability of Official Versions
Once an instrument is formally released as Official, researchers are expected to request and use the Official Version for all new studies through the EuroQol Registration Form.

The Official Version may be available at launch or released thereafter, depending on the language pair and mode of administration.

For studies that have been conducted using an Experimental Version, the Version should continue to be cited as "Experimental" in any publication, even if the instrument is launched as Official during the course of the study.


The Foundation makes no representations or warranty whether the Experimental Version is of sufficient quality or fit for the purposes for which User intends to use the Experimental Version. The Foundation will not be liable for the use of Experimental Versions.

Research and Development

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Your Details

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Co-applicants

This will be used in our user platform to access, and you can add Co-applicant as many as you want.

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Intended use of Experimental Version

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Study motivation


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Summary of the project


  1. Use of Instruments:
    Description of the planned use EuroQol instruments by including information on whether the full instrument or only some items will be used.
  2. Data Collection:
    Description of how data will be obtained e.g primary data collection or piggyback study and, if data is already available, their characteristics and who funded the project.
  3. Population:
    Describe in which population the Experimental instrument was or will be administered, including information about the sample size and motivation of the importance of the chosen population.
  4. Comparative studies:
    In case of comparative studies, provide information on which instuments will be used as comparators.
  5. Appropriateness of items:
    For studies investigating the appropriateness of individual items, other candidate items, rewording of items, the appropriateness of the frequency and severity levels etc., and studies investigating methodological questions for future valuation studies, explain in detail the steps of the project.
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Contribution


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Select Experimental Version


(Note that developer group will decide if the requested language version is suitable for the study.)
Note that EuroQol recommends the use of one bolt-on with the EQ-5D-5L; however, users may decide to use more than one.
Please select the bolt-ons you plan to use. For each, specify the country, language, mode of administration and platform, then click ‘+Select’

To use the EQ-5D Bolt-on Toolbox, users are required to have an EQ-5D-5L license. Please register for the EQ-5D-5L first, or if you already have a license, please enter the registration number in the cell below: Please complete this field
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Level
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Language
Mode of Administration
Platform
Action
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Please select atleast 1 Experimental Version.

(Note that this will make the license process longer and assistance might be requested to create the requested language.)

Permission


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Please note that EuroQol Research Foundation does not recommend modifying Experimental Version, as by changing the instructions of Experimental Version results in an instrument that deviates significantly from the original version. This could lead to difficulties with authorities if they request Experimental Version data, as the modified version might produce different data.
EuroQol Research Foundation would not be responsible and not liable for any issues with the use of the data.
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