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Survey 1: Prioritizing Symptoms Impacting Quality of Life for CDG

The CDG Symptom Prioritization Questionnaire (CDGSPQ) is now available for all CDG patients, family members and caregivers in



Other languages are coming soon.

Why are we doing this research?

This will be the first study evaluating symptom prioritization for the development of new or improved therapies for symptom relief among people living with CDG. Our study will as well collect current care and management across CDG types, which includes several questions for which collective findings will be powerful to ameliorate Quality of Life of people living with CDG and their family members, including:

  1. What signs and symptoms do people living with CDG and their family members prioritize for symptom relief?  And to what extent do these symptoms affect the quality of life (QoL) of people living with CDG and their caregivers? 
  2. What are the best medications, food supplements, diets, and management/rehabilitation therapies available to control the CDG signs and symptoms? 
  3. Which CDG signs and symptoms are a priority to treat considering patient experiences? 
  4. What is the impact of hospitalizations on the CDG patient? 
  5. What health care specialists, reference centres/clinics and services are available for CDG in your country?

Who is conducting this study?

CDG & Allies – Professionals and Patient Associations International Network (CDG & Allies – PPAIN) is conducting this study. CDG & Allies-PPAIN is the unique international patient-led network focused on increasing CDG knowledge and ultimately, contributing to future therapies and better management of CDG.

Who can participate?

All CDG patients/family members/caregivers, and family members/caregivers of CDG patients who have passed away can participate in this survey, available now in English. After the 5th World Conference on CDG (13-16 May 2021), this survey will be available in Portuguese, Spanish, French, Italian, Dutch and German.

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 until September 30th, 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.

The CDG Symptom Prioritization Questionnaire (CDGSPQ) is now available for all CDG patients, family members and caregivers in



Other languages are coming soon.

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Page modified at Tuesday, July 6, 2021 - 22:02