Welcome to the International study dedicated to the CDG journey Mapping! We need you to be part of the change in our CDG community!
This study is formed by two online surveys! NOW you can boost CDG research and participate in fulfilling the surveys that will improve Quality of Life for CDG.
Journey mapping is a great way to capture and visualize all the available knowledge, the data, and the insights about the current journey, and then take it from there.
So far, any study has been done to collectively better understand people living with CDG and their family members, including their journey. What are their concerns, priorities, needs, and their expectations when living with CDG? Which symptoms have a major impact in their quality of life? What are the current CDG care and management strategies? What does it mean to live with the disease?
Patient journey mapping
Patient journey mapping is a great way to capture all these things. Check out the slide below to learn what patient journey mapping is and what such maps typically include.
Patient journey maps cover touchpoints and interactions with and between different stakeholders in the healthcare setting. It's a complex environment.
It's also about mapping the functional, the clinical journey, and the emotional one. An emotional journey is what gives you the real holistic view of the person going through this journey. It gives you the answer to the following questions: What are their experiences? How do they live through this journey? What is the context? What about their families and their relatives? What about the personal situation?
Capturing these people’s experiences and their points of view helps thinking about making their lives better and improving their experience1.
In our case, in order to build a complete and robust CDG Patient Journey mapping, two online surveys will be administered. The sessions of the 5th World Conference on CDG planned to be held 13-16 May 2021, will actively share the collective results from the findings of the 2 surveys that we will administer before the conference. Thanks for contributing to boost genuine research and to actively make possible the overall sessions during the 5th World Conference on CDG!