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Survey 1: FAQ

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



Other languages are coming soon.

Frequently Asked Questions

  1. Can I exit the survey before it is complete and return to finish it later?
     
  2. How much time does it takes this survey?
     
  3. Until when can you participate?
     
  4. Will there be a follow up to the survey?
     
  5. How will we share the survey results with you?
     
  6. When will we share the results of the survey?
     
  7. When will the survey close?
     
  8. How can CDG patient associations, physicians, researchers, advocacy groups contribute to the survey?
     

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.

 

 

 

1. Can I exit the survey before it is complete and return to finish it later?

YES. You only need to access the survey link, with the SAME DEVICE (phone, computer) and the SAME INTERNET BROWSER.

 

 

 

 

2. How much time does it takes this survey?

The survey will take around 45 minutes to complete.

 

 

 

 

3. Until when can you participate?

Complete this survey until September 30th, 2021.

 

 

 

 

4. Will there be a follow up to the survey?

As part of this survey, you can choose to participate in this survey anonymously, or to provide contact information, to be contacted for future studies. Moreover, the collective anonymous results will be made available during the 5th World Conference on CDG. Also, we will post results at the Dashboard section

 

 

 

 

5. How will we share the survey results with you?

We plan (1) to make available regular updates about survey participation through provisional reports posted to our Results Dashboard section; (2) to provide key results from the survey to the CDG community through the website; and (3) to publish reports of detailed analyses of the data in scientific journals and conferences.

 

 

 

 

6. When will we share the results of the survey?

The website now contains a dashboard for preliminary survey results, which will be updated regularly. Once the survey closes, we will analyze the data and share the summary results on the survey website.

 

 

 

 

7. When will the survey close?

The survey will close September 30th, 2021.

 

 

 

 

8 . How can CDG patient associations, physicians, researchers, advocacy groups contribute to the survey?

You can help to recruit CDG patients or their family members to the survey.


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Page modified at Tuesday, July 6, 2021 - 22:01