Instructions and Informed Consent for Participants

Please read the following information and instructions carefully:

Question Title

* 1.
Make your voice heard!

WHO CAN PARTICIPATE IN THIS QUESTIONNAIRE?
All CDG patients, their family/caregivers, and family/caregivers of CDG patients who passed away can fill in this questionnaire.

WHAT ARE THE QUESTIONNAIRE GOALS?
  • Determine the presence, frequency, and severity of CDG signs and symptoms and their impact on patients’ Quality of Life (QoL).
  • Collect the best medications, food supplements, diets, and management/rehabilitation strategies available to control the CDG signs and symptoms.
  • Assess which are the most important signs and symptoms to treat, according to CDG patients and their family members.
  • Determine the impact of hospitalizations on the CDG patient.
  • Identify the health care specialists, reference centres/clinics and services are available for CDG patients.
  • Assess the impact of CDG signs and symptoms on the caregiver’s activities/tasks.
TIME COMMITMENT
The questionnaire will take around 45 minutes to complete, and the participants can fill in part of it and then return to it to finish it, as long as within the deadline of the project (09th April 2021) and using the same link, device (e.g. mobile phone, laptop) and internet browser. To return to the previous question, please click on the PREV BUTTON, instead of the back button from the internet browser.
 
DATA STORE AND PROTECTION, AND PUBLISHED RESULTS:
To improve the lives of people living with CDG, we will share the overall results of the survey with you and communicate them to decision-makers (without communicating your individual responses). 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.

HELP CONTACT:
If 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 CALL, or Zoom meeting.

ELECTRONIC INFORMED CONSENT:
Clicking on the "agree" button below indicates that:
  • You have read and understood the previous information;
  • You voluntarily agree to participate;
  • You are at least 18 years of age and a CDG patient yourself or a CDG family member/caregiver.
Please indicate your choice below:

 
2% of survey complete.

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