Survey 2: CDG Experiences over time from families and professionals views

What is this survey about?

From the perspective of “patient-centered” healthcare, mapping experiences from people living with a certain condition throughout their journey is critical to improve the healthcare pathway.

Objective of the survey:

The present study corresponds to part 2 of an international study aiming to capture the full picture of the people living with CDG from different perspectives: the ones living with CDG, their caregivers and the healthcare professionals involved. This survey has the specific goals:

• To describe the experiences during the quest for CDG diagnosis,  and identify CDG-related information needs throughout the CDG journey (since diagnosis)
• To map the level of  awareness about the development and dissemination of Clinical Guidelines (CGs) for CDG, 
• To collect experiences on participation in CDG clinical research
• To identify current support measures and gaps given by Worldwide CDG patient groups,
• To assess digital solutions tailored for people living with CDG and their family members.

The collective and anonymous results from the present study will: 

• serve as an discussion point in sessions of the 5th World CDG Congress for families and professionals planned to be held from 13-16 May 2021. 
• Be published in different formats to allow their use for advocacy and policy making at international levels (we plan to publish an article, fact sheets and infographics).
• Better define the need for resources, and allow for  better tailored initiatives for people who live with CDG, healthcare professionals or stakeholders’ individual needs, helping the person who lives with a certain disease experience and leading to improved  individuals outcomes.

Note: If the number of participants allows it, the results of this survey  will be broken  down per CDG type and/or country.

Why?

Our research team has identified a major gap in current CDG knowledge. The true CDG journey is still unknown. We have all heard about family’s experiences and views when questing for a diagnosis and fighting for adequate care for their beloved ones. But to our knowledge no  study has systematically collected  the CDG journey. Mapping CDG experience along the entirety of their disease pathway, from initial signs and symptoms through diagnostics to first definitive treatment, enables a greater understanding of the efficiency of care delivery and identifies opportunities for improvement or, in the case of CDG management, any points that require further clarity or additional interventions.

Can the survey be saved and finished later?

YES. Participants can fill in part of it and then return to it to finish it, using the same device (e.g. mobile phone, laptop) and internet browser. To return to the previous question, please hit the PREV BUTTON, instead of back button from internet browser.

How much time does it takes this survey?

The survey will take around 45 minutes to complete.

Until when can you participate? 

Complete this survey at the earliest (until August 31st, 2021).

What will happen next?

If you decide to share your contact information, we may follow up with you in the future with other study opportunities. However, if you are not comfortable with that, you can complete the survey anonymously. Overall results will be shared with/communicated to study participants and decision-makers on this website. You will not be able to be identified in the survey results. Your contact details and any written records of your responses during the study will be kept in secure storage, which only the research team can access.

To complete the survey or learn more:

If you have questions or you need help, please do not hesitate to contact us asking for help related to this survey Here.
We will be available to schedule a Skype, WhatsApp calls or Zoom meetings.