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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, 2014. 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 882026890
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 EQ-5D use by non-commercial parties.
  • In 2020 the Board of the Foundation approved the current 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 (2019-2020) the EuroQol Research Foundation received 5583 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 States, the United Kingdom, Australia, Germany, Japan, the Netherlands, Canada, France, Spain and India. The vast majority of EQ-5D use is for free. 635 paid license agreements were set up with commercial companies. The sponsorship 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, Norway, Sweden and Canada. For this country-/ province-wide use of EQ-5D no license fee is paid. In fact, no license fee is charged for non-commercial use of EQ-5D of any scale.

The COVID-19 pandemic resulted in a brief dip in the number of requests for using EQ-5D in March and April 2020. However, a 20% increase was noted in the number of registrations for using EQ-5D, as compared to the preceding year (2018-2019). The number of commercial license agreements stayed about the same.

Financial year 2019/2020 was characterized by a 13% drop in invoiced income, as compared to the preceding year (2018/2019), which showed a 40% increase in invoiced income. Before 2018/2019 an annual increase of 10-15% was normal. If the invoiced income of 2018/2019 is considered an outlier, the invoiced income in 2019/2020 is in line with the longer-term trend.

The reduction in invoiced income was offset by substantial revenue deferrals in previous years, partly due to the Board’s decision in 2016/2017 to take a more conservative approach in the deferral of revenues. As a result the Executive Committee was able to approve funding or co-funding for 95 research projects for a total value of € 4,070,387, which is an increase of 51%, as compared to the previous financial year.

Looking forward, similar to 2019/2020 a significant amount of sponsorship income invoiced in previous years will be available in 2020/2021. An uncertainly is the impact of COVID-19 on clinical trials around the world, which may lead to less sponsorship income. The Board of the EuroQol Research Foundation is working with several forecasting scenarios, but even in a pessimistic scenario of a 10% decrease in sponsorship revenues a research budget of around EUR 3.5 to 4 million is anticipated. The Board and the Executive Committee are jointly discussing options to deploy our increased spending capacity, in line with our Strategic Plan and the Mission and Vision of the Foundation.

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. Increasingly, studies are funded on new instruments in development by EuroQol members. 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 funded scientific meetings for a total cost of €955,112. This included the annual Plenary scientific meeting and the Academy meeting. Both meetings were well attended by both members and non-members of the EuroQol Group Association, with 132 scientist attending the Plenary meeting, and 85 scientists attending the Academy meeting). Due to COVID-19 the 2020 Plenary scientific meeting was held as a virtual meeting.

(Version 31JAN2021)

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