The WP16 objective is to provide an EU-wide education programme on transversal aspects of rare diseases (RD) research. This course is to be fully available online to all interested stakeholders. The expected impacts are to better inform and train the RD community as well as to increase awareness on RD research and foster top-level research
Description of work & results
The first task of the WP16 (from January to June 2019) focused on assessing the needs, the target audience and the main topics of the academic education course. Current developments of WP16 include the selection of the e-learning platform and the development of the two first modules of the course. Those modules should be available by the end of 2020 (Module 1: Research in rare disease diagnosis; Module 2: Innovative personalized therapies for rare diseases).
- Assessing the needs of the European RD community in e-learning training. A first comprehensive survey was sent in April 2019 to more than 900 European Healthcare Providers, members of the European Reference Networks (ERNs). This survey did include assessment of the training needs (For more information on ERN training needs, please see the EJP RD WP17: ERN RD training and support program). For ERN members, most important training domains are “Scientific tools & methodologies” and “Technical skills”. A clear preference was highlighted for in-person trainings. Students were identified as the main target to train.
- WP16 survey. To refine and spread out the specific online training needs above those of ERNs, a second survey was developed and disseminated from early June till mid-July 2019.
Multiple channels of dissemination were used encompassing the 30 KoL interviewed during the benchmarking activity of WP16; all EJP-RD Partners; Patients’ Organisations, Orphanet nodes, Universities, Funding Agencies, Research Institutes. The survey was also dsseminated via Twitter, the EJP-RD website, and some WP16 partners’ websites and networks.
Results from the WP16 Survey
Result #1: 352 individuals answers were received from a very diverse range of stakeholders and countries.
To be noted, the tremendous interest shown from the scientific Turkish community (142 responses). In order to analyze any key differences amongst responders based on their geographical provenance, a comparative analysis of the results was performed between Western-Central EU, Eastern EU and Turkey responses (see the second slide of the pdf file).
Result #2: Main responders of the survey are academic researchers (30%) and physicians (21%). Interestingly, other stakeholders such as nurses, bioinformaticians, data analysts, or again medical biologists have also shown a clear interest in the survey.
Result #3: Students (both from medicine or PhD) are the main target to train.
Result #4: The three priority topics to be addressed according to the RD community are: Research in diagnosis, Innovative personalised therapies and Translational research.
Result #5: The course will foster interactivity both between learners themselves (peer-to-peer learning, sharing experiences and understanding, ultimately favoring new collaborations, …) and between learners and experts (questions/answers sessions to ensure the most comprehensive understanding of the course content).
Result #6: As far as e-learning tools are concerned, the community’s choice tends towards active learning exercises, webinars, advanced lecturer videos (~20min) and PowerPoint presentations with subtitles or a voice over. Additional outcomes from the survey include the wish for an academic accreditation.
3. Ongoing and future tasks
The two first modules are currently being developed and are aimed to be launched by the end of 2020. Stay tuned for updated information.
For more information, please contact the WP16 co-leaders:
Download the pdf file