Dear Scientist,
You may have heard about the European Joint Program for Rare Disease (EJP RD, www.ejprarediseases.org), a multifaceted program aimed at supporting rare disease research in every possible way. It includes funding of preclinical research, networking and training capacities as well as the development and application of tools and methodologies facilitating the generation, analysis, and dissemination of data all the way from genetic/translational research to clinical trials.
One objective of EJP RD is to decrease data and resource fragmentation this being undertaken via the development of the “Virtual Platform for rare diseases”, where researchers and clinicians working on rare diseases will be able to query for relevant resources, standards and research data.
Today, we would like to explore your needs in research support and establish initial contacts with any researchers who may be interested in some of the planned services and activities of the Virtual Platform.
To that end, we have designed an online survey that we invite you to complete. The survey comprises 4 main sections: About your research and needs; Data generation and storage; Data annotation and FAIRification; Use of existing resources and infrastructures for research data.
We encourage you to forward this invitation to colleagues and co-workers, who may have complementary fields of interest. The completion of the survey will not take more than 10-15 minutes.
Access the survey via this link: https://sondage.inserm.fr/index.php/753869/lang-en
Please complete the survey by 21/04/2020
Thank you very much for your support and collaboration,
Best regards,
The EJP RD Team