Thank you for your interest in this study. We are interested in learning about the experience of adult patients living with Medium-Chain Acyl-Coenzyme A Dehydrogenase Deficiency (MCADD) and caregivers of pediatric patients with MCADD.
We will first be asking you some questions to see if you are eligible to participate in this research study. Those who meet the inclusion criteria will be asked to complete an online survey that should take about 30 minutes to complete.
Any information you provide to us as part of the eligibility questions will be treated as confidential. It will be combined with data from others like yourself and will be stored in the United States. Your information will be kept secure at all times. You will remain anonymous and your information will not be passed to any other organization without your permission. Any personal data you give us as part of the eligibility questions will be deleted 7 years after study completion.
If you are eligible to complete the 30-minute online survey, you will be provided with a separate consent form to explain how the study works and your rights as a participant. You have the right to withdraw from the study at any time.
If you have any questions, please contact our study team at mcadd@lumanity.com (please include ‘MCADD study’ in the email subject line) or call 617-612-4054.