GET
INVOLVED
CAREGIVER-REPORTED ECONOMIC BURDEN AND QUALITY OF LIFE IMPACT OF MCT8 DEFICIENCY
What is the study about?
Egetis Therapeutics wants to better understand the impact of MCT8 deficiency. To achieve this, we have sponsored an international online survey for adult caregivers of people 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 sibling, 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
No specific patient health information (PHI) will be collected.
Why should you take part?
You will have the opportunity to:
- Contribute to meaningful research: that will provide a better understanding of the impact of MCT8 deficiency
- Have your voice heard
- Add to the evidence available to authorities making decisions on availability of care for rare diseases
- 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.