Toolkit on RoIPD
New tools for understanding the Return of Individual Participant Data
The FACILITATE project has developed a series of tools to raise public awareness of issues related to the Return of Individual Participant Data (RoIPD).
These resources focus on RoIPD-related topics such as informed consent, data protection, participant rights, individual data management and RoIPD potential processes. The key concepts are introduced in a practical way, translating the ethical-legal framework developed by the FACILITATE consortium into concrete, accessible, and easily usable informational and training tools.
Educational materials are designed especially to inform participants, but they play a significant role in supporting Patients’ Organizations, Healthcare Professionals, and Research Staff establishing a shared language around data stewardship and participant rights. Through infographics, multimedia tools, a glossary and structured guidance, the toolkit contributes to a culture in which participants are recognized not as passive subjects of research, but as informed partners in a collaborative scientific enterprise.
The training kit is structured as follows:
⦁ A set of visual infographics describing the data management process and providing detailed explanations of the RoIPD processes.
⦁ A series of multimedial videos to facilitate the dissemination of concepts related to the RoIPD
⦁ A plain-language glossary of the most important terms used in RoIPD.
The tools include a set of multilingual materials – Posters, Flyers, and Brochures – also intended for distribution at public institutions – such as hospitals, pharmacies, medical clinics, community centers, patients organizations, etc. – across European countries.
https://facilitate-project.eu/multilingual-tools/
Explore the Toolkit on RoIPD
Visual Infographics
A journey we take together
This is the final infographic, which highlights the FACILITATE project as a catalyst for the profound changes currently underway in the European Union regarding data return. The key message is: Participants, doctors, sponsors, researchers, and regulatory authorities...
Part 3. Frequently Asked Questions
This final section provides information on points that are not covered in detail in the previous sections (such as what data is returned, when, and how). Below are the questions: What data is returned to me? When I can get my data back? What happens if unexpected data...
Part 2. Return of Individual Participant Data: a journey
This section dives into the basics of clinical research, reviewing what a clinical trial is, which laws govern clinical ⦁ We now delve into the heart of the RoIPD topic. The Key message is: Let’s explore how Returning of Individual Participant Data is reshaping the EU...
Part 1. Clinical Research in a Nutshell
This section dives into the basics of clinical research, reviewing what a clinical trial is, which laws govern clinical trial data in the EU, what individual participant data consists of, and how it is managed.The first fact sheet is focused on clinical trials and...
Taking part in a clinical trial? Get your individual data returned to you!
This introductory infographic provides an overview of the main topics covered in the following 3 sections: Part 1. Clinical Research in a Nutshell The basics of clinical trials, how individuals participate in it, and what laws govern all this in the EU. Part 2. Return...
Multimedial Videos
Video 3: The FACILITATE Project and RoIPD
This video is the third in a series of three produced by the FACILITATE project (https://facilitate-project.eu) as a tool to maximize the dissemination and impact of the project’s findings on the Return of Individual Participant Data (RoIPD). This final video outlines...
Video 2: Return of Individual Participant Data
This video is the second in a series of three produced by the FACILITATE project (https://facilitate-project.eu) as a tool to maximize the dissemination and impact of the project’s findings on the Return of Individual Participant Data (RoIPD). The video focuses on the...
Video 1: Introduction to Clinical Trials
This video is the first in a series of three produced by the FACILITATE project (https://facilitate-project.eu) as a tool to maximize the dissemination and impact of the project’s findings on the Return of Individual Participant Data (RoIPD). The video serves as an...
