EFCNI research participation

According to our mission EFCNI’s daily work is dedicated to improving the situation of pregnant women and newborn infants across the full spectrum of prevention and care to promote the best start in life for every baby. Our work is based on the following three areas: 

  • pre-conceptional and maternal care
  • treatment and care of preterm and ill born infants
  • follow-up and continuing care


Promoting research evidence and supporting research projects which generate new knowledge on prevention of preterm birth, performance of diagnostics and therapies in neonatal care and the impact of follow-up screening programmes and family-centred developmental care aspects are key for us to follow our mission.

EFCNI’s research portfolio

We welcome inquiries from researchers who seek patient representation at the five principal stages of a research project: 
  1. Agenda setting and research prioritisation (e.g. gap analysis, definition of patient reported outcomes, setting up and coordination of parent representatives)
  2. Research design and planning (e.g. development of the grant application, review/comment on data collection methods, development of recruitment strategies)
  3. Research conduct and operation (e.g. field work, patient information and consent)
  4. Data analysis and interpretation (e.g. interpretation from patient perspective, advice on key messages)
  5. Dissemination and communication (e.g. advocacy, post-study communication to patient community)

As a co-applicant EFCNI expects:

  • Timely requests allowing sufficient time for decision-making and planning
  • Involvement in the early stages of the development of the research project and during the application phase
  • Being part of the steering group of the project 
  • Leading work packages with regard to patient involvement and outreach
  • Transparency e.g. by sharing the final grant application before the submission deadline and full information
  • Adequate compensation of costs and working time

How to approach us

In case you’d like to involve us, as a patient organisation covering health-related topics ranging from pre-conception, to pregnancy, to early childhood in your research project, we kindly ask you to contact us. Please send your request (access the request form here) timely – at least eight weeks before the submission deadline of the grant application – to research@efcni.org. EFCNI will determine whether the requested support for your project is possible and will get back to you as soon as possible.

Together with you we can then elaborate an individualised strategy on how to support your project best and calculate the realistically costed work time.

Following experiences and discussions of EFCNI with representatives of national parent organisations and other stakeholders, EFCNI developed a collaborative Position Paper outlining principles for partnership between researchers and parent representatives. Options for structured and meaningful involvement of parent representatives in research projects are illustrated in order to facilitate a fruitful collaboration between stakeholders in neonatal research.