Take part in our caregiver study about the impact of MCT8 deficiency on carers

Caregiver-reported economic burden and quality of life impact of MCT8 deficiency

What is the study about?

Egetis Therapeutics wants to understand better the impact of MCT8 deficiency. To achieve this, we have sponsored an international online survey for adult caregivers of patients living with the condition.

Why are we running the study?

It can be difficult to live with or care for someone with an illness, but it has an even greater impact in the case of a rare disease like MCT8 deficiency. Caregivers face many responsibilities outside of their role as a friend or parent, which can lead to emotional, financial, social, and professional challenges. Studies have been done on the burden on caregivers in general, but nothing has specifically focused on MCT8 deficiency so far.

What data are being collected?

The survey will collect the following data:

  • Demographic data on caregivers (e.g., age, sex, your relationship to the person with MCT8 deficiency that you care for, living situation etc.)
  • Data on the cost of caring for a person with MCT8 deficiency
  • Data on the impact of MCT8 deficiency on the quality of life of patients, as reported by caregivers
  • Data on the impact of MCT8 deficiency on the quality of life of caregivers

Why should you take part?

The survey will collect the following data:

  • Contribute to meaningful research: share your experiences and provide a better understanding of the impact of MCT8 deficiency
  • Get your voice heard
  • Participate in the study from the comfort of your own home
  • The survey will take approximately 1 hour to complete. To thank you for your contribution, you will be eligible to receive Amazon vouchers, to the value of €50 or approximate local currency equivalent.

If you would like to participate in the study, please email the study mailbox at [email protected] and we will send you a link to the study.