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EUROQOL | ANBI

The Stichting EuroQol Research Foundation has been granted the status of Charitable Institution, in Dutch Algemeen Nut Beogende Instelling (ANBI), since January 1st, 2015. Shown below is information that an ANBI should make public. Please contact us if you have questions, or require more information.

Name: Stichting EuroQol Research Foundation
RSIN: 804679101
Address: Marten Meesweg 107
3068 AV Rotterdam
Telephone: +31 884400190
Email: EuroQol User Information Service
Board members: See webpage Board

Aims

  • To serve the public interest by supporting / instigating / performing scientific research and development of instruments which describe and value health without an aim for profit.
  • To promote the scientific and other interests of the EuroQol Group Association (“EuroQol Group”).
  • To manage intellectual property rights that the members of the EuroQol Group have acquired in the context of the EuroQol Group Association.
  • To promote the use of instruments developed by the EuroQol Group and to support individuals and organizations across the world seeking to use those instruments.
  • To foster and support an international community of researchers whose activity informs the development and application of EuroQol Group instruments.
  • To ensure free access to the accumulated research expertise of the EuroQol Group and to actively promote the transfer of knowledge and evidence regarding the use, analysis, and interpretation of measures developed by the EuroQol Group.
  • To support promising early career researchers in the field of health and quality of life research through involvement in EuroQol Group activities.

Policy Plan

For our policy plan please click here.

Financial policy                                  

  • The Foundation does not have an aim for profit.
  • The capital of the Foundation is formed by subsidies, gifts, bequests and other income. The Foundation receives financial support by means of sponsorship/ license income from commercial parties active in the development of drugs or medical devices. The Foundation requests a modest contribution to the costs of the development of the instruments when these are used in work that will not result in scientific publications in the public domain. No contribution is expected from scientific research conducted by non-commercial parties.
  • In 2017 the Board of the Foundation approved the investment policy. Please click here for the current version.
  • The Foundation’s capital is used to finance scientific research studies and necessary software, an annual scientific congress and other scientific meetings and other costs of the Foundation, such as personnel costs.
  • The members of the Board will not be remunerated for their activities.
  • Personnel working for the Foundation are remunerated in line with the collective labour agreement aligned with Dutch Universities.

The Treasurer of the Board of the Foundation will present at least a balance sheet and the statement of income and expenses within 4 months after the financial year has ended on June 30th at the general assembly meeting of the EuroQol Group.

Report of activities

In the past financial year (2016-2017) the EuroQol Research Foundation received 4377 requests to use EQ-5D instruments. These requests came from all over the world. The top 10 requesting countries were, in descending order: the United Kingdom, the United States, Australia, Germany, Japan, Canada, the Netherlands, Spain, China and Denmark. The vast majority of EQ-5D use is for free. 404 paid license agreements were set up with commercial companies. The income generated by this fraction of users enabled the Foundation to achieve its Aims.

Increasingly, EQ-5D is used for Routine Outcome Measurement (ROM) and as a Patient-Reported Outcome Measure (PROM). EQ-5D is used province- or nation-wide as a PROMs measure in the United Kingdom, Sweden and the province of Alberta, Canada. Recently, a similar agreement was signed with the Norwegian institute of Public Health. Typically, a research program is funded by the licensee, instead of payment of a license fee.

In the past financial year (2016-2017), the EuroQol Research Foundation funded or co-funded 45 scientific research studies, for a total value of over 1.3 million euros. Compared to previous years, both the number of funded studies and the total budget available for research declined. There are two reasons for this change: licensing income was reduced, predominantly due to a decline in the licensing of EQ-5D-3L. The second reason for the decline in budget was because the Board of the EuroQol Research Foundation approved a change in its accounting principles, whereby more income is reserved for future years. This change affected the budget available for research in the past financial year and will have a similar effect on the research budget for the current year. The balance between reserved and realised income will be restored the following year.

Research studies funded or co-funded by the Euroqol Research Foundation are those that meet the aims and objectives stated above. Typically these are methodological studies on using the EQ-5D, or the analysis and modelling of EQ-5D data. Furthermore, studies were started on the Youth version of EQ-5D and on obtaining general population reference data in countries in the Americas, Asia and Europe.

Lastly, in line with our Aims, the Foundation organized our annual Plenary scientific meeting, which was attended by 111 scientists, both members and non-members of the EuroQol Group Association. The Foundation also organized a mid-year Academy meeting, which was attended by 102 scientists. Finally the EuroQol Foundation funded workshops, presentations and other educational and scientific events to present and stimulate EQ-5D-related research at ISPOR EU, ISPOR US and the South China Pharmaco-economics Forum.

(Version 30JAN2018)

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