Organizing Questions
- Which organization(s) are significant sources of research funding?
- What does the normal science funding/policy decision-making process look like?
- Which patient advocacy groups, if any, are active in the area?
- Are there existing national/regional organizations that work towards improving research funding/policy?
- How do scientists currently contribute to the existing funding/policy-making/advocacy process, if at all?
- When are science funding/policy decisions made?
- What kinds of opportunities exist for scientists to interact with funders and policymakers?
1. Which organization(s) are significant sources of research funding?
- National government
- The National Biomedical Research Networkis coordinated and funded by the Instituto de Salud Carlos III. www.isciii.es
- Ministerio deCiencia, Innovación y Universidades. www.educacionyfp.gob.es/servicios-al-ciudadano/becas-ayudas.html
- Centro para el Desarrollo Tecnológico Industrial (CDTI) is a Public Business Entity, answering to the Ministry of Science, Innovation and Universities, which fosters the technological development and innovation of Spanish companies. It is the entity that channels the funding and support applications for national and international R&D projects of Spanish companies or in collaboration with them. www.cdti.es/index.asp?MP=100&MS=802&MN=1
- Boletín Oficial del Estadopublishes all national governmental grants. www.boe.es/
- Local/regional governments
- Local governments also offer grants in various departments, including Education, Health, and Industry. In Madrid, for example:
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Dirección general de Universidades e Investigación de la Comunidad de Madrid.www.comunidad.madrid/inversion/innova/convocatoriasayudasInnovacion
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- Local governments also offer grants in various departments, including Education, Health, and Industry. In Madrid, for example:
- Private foundations
- Obra social Fundación “la Caixa” www.obrasociallacaixa.org/es/convocatorias
- Fundación BBVA.www.fbbva.es/convocatorias/
- Fundación Mapfre. www.fundacionmapfre.org/fundacion/es_es/
- Fundación Mutua Madrileña.www.fundacionmutua.es
- Fundación Ramón Areces.www.fundacionareces.es/fundacionareces/es/becas-y-ayudas/convocatorias/
- Nongovernment organizations (NGO) and charities
- Federación Española de Enfermedades Raras (FEDER). www.enfermedades-raras.org/
- Fundación ONCE.www.fundaciononce.es
- European funding opportunities in Spain
- European Reference Networks (ERN-EYE) aims to provide the best care to patients with rare eye disease across the EU, improving diagnostic tools, harmonizing clinical and pre-clinical research and bringing best practices and training for rare eye diseases. It involves four thematic working groups: rare diseases of the retina, neuro-ophthalmology rare diseases, pediatric ophthalmology rare diseases, and rare anterior segment conditions and six transversal working groups. Research, innovation and knowledge generation are key elements or the ERN EYE. www.ern-eye.eu/
- Horizon 2020 is the biggest EU Research and Innovation program that aims to ensure Europe produces world-class science, removes barriers to innovation and makes it easier for the public and private sectors to work together in delivering innovation. www.ec.europa.eu/programmes/horizon2020/
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- European Research Council (ERC) is a public body for funding of scientific and technological research conducted within the European Union (EU). Researchers from any field can compete for the grants that support pioneering projects. www.erc.europa.eu/
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2. What does the normal science funding/policy decision-making process look like?
- What are the criteria the funding/policy organization/s use to make their decisions?
Each funding opportunity will have their own policies and pathways for approval. All official programs and grants are developed under the umbrella of National Plan of Research, currently “Plan Estatal de Investigación Científica y Técnica y de Innovación (2017-2020)” www.ciencia.gob.es/stfls/MICINN/Prensa/FICHEROS/2018/PlanEstatalIDI.pdf
For specific health-related research, there is a Strategic Health Action (Acciónestratégica en Salud, AES) www.iacs.es/evento/publicada-accion-estrategica-salud-aes-2019/
- Is peer/scientific review involved in the funding-decision process?
Yes, peer review is the common practice for most funding opportunities. Applicants will have calls with necessary offices, e.g. human resources, infrastructures, networks, etc. Calls are evaluated by the ANECA National Agency for Quality Assessment and Accreditation, which is an autonomous body of the Ministry of Science, Innovation and Universities. www.aneca.es/
3. Which patient advocacy groups, if any, are active in the area?
- National
- Federación Española de Enfermedades Raras (FEDER).www.enfermedades-raras.org/
- Federación de Asociaciones de Distrofias Hereditarias de Retina de España
- (FARPE).www.retinosisfarpe.org
- Asociación Española del síndrome de Sjögren (AESS).www.aesjogren.org
- Asociación de pacientes de Uveitis (AUVEA).www.asociacionauvea.es
- Aniridia Spain.www.aniridia.eu/tag/spain/
- ONERO National Observatory for Rare Eye Diseases (ONERO). www.onero.org
- European
- Retina International. www.retina-international.org
- Aniridia Europe.www.aniridia.eu
- Eurordis.www.eurordis.org/es
- Do they partner with researchers to promote research funding and policy?
- Federación de Asociaciones de Distrofias Hereditarias de Retina de España
- (FARPE) offers research grants which are evaluated by the national agency of research and have their own Scientific Advisory Board.
- Federación de Asociaciones de Distrofias Hereditarias de Retina de España
- (FARPE) offers research grants which are evaluated by the national agency of research and have their own Scientific Advisory Board.
4. Are there existing national/regional organizations that work towards improving research funding/policy?
- Centro de Investigacion Biomedica en Red, Enfermedades Raras (CIBERER ISCIII). www.ciberer.es/en
- The Instituto de Investigaciones Clínicas y Médicas. The Institute strives to bring advancement and research to clinical practice in the most efficient way possible. www.fjd.es/iis_fjd/en/introduction/institute
- OftaRed NETWORK. The NETWORK aims to generate the knowledge necessary to preserve health and promote well-being through adequate prevention, early diagnosis and treatment of the most prevalent eye diseases in our population The NETWORK aims to generate the knowledge necessary to preserve the health and promote well-being through adequate prevention, early diagnosis and treatment of eye diseases and greater prevalence in our population. www.oftared.com
5. How do scientists currently contribute to the existing funding/policy-making/advocacy process, if at all?
Via OftaRED NETWORK.
6. When are science funding/policy decisions made?
- National Research Plan - every 4 years
- AES - annually
- Regional plan - every 4 years
7. What kinds of opportunities exist for scientists to interact with funders and policymakers?
- Can scientists invite decision makers to their lab/institution to see their work firsthand?
Yes, during various scientific conferences and meetings and in the official collaborative networks, like OftaRed, CIBERER, etc.
- Do the funding/policy organizations hold open meetings or solicit comments from the public that researchers can participate in?
Yes, before National or Regional plans are confirmed.
Contributors
Ester Carreño Salas
Pablo Pérez Merino
Jose Carlos Pastor Jimeno
Carmen Ayuso