My Rare Diet Participation

NUCDF has been working to develop MyRareDiet, a unique site specifically designed to help UCD and other Inborn Errors of Metabolism patients and caregivers more easily track, monitor, and manage dietary treatment. The purpose of the second phase of the study is to evaluate MyRareDiet for people who have or take care of, those who have inborn errors of metabolism. You may receive a $200 gift card for your participation. The requirements to participate include the following:

First Name

Last Name

I'm the caregiver or parent of My Rare Diet participant

If yes, complete name below

Name of minor participant

First Name

Last Name

m9u1bmaolr7p

Cell phone

I agree that you may contact me via text messaging

Address

Country

Address Line 1

City

State/Province

Postal Code

Time Zone

Age of participant

UCD or Inborn Error of Metabolism

Study qualifications:

The participant currently lives in the U.S.
Medically manage UCD or IEM (liver transplant is an exclusion for the study)
Age is greater than 12 months and less than or equal to 80 years of age
Caregivers are required for participants less than or equal to 17 years of age
Consume a diet greater than 50% of energy is supplied by oral foods with a known dietary energy goal and a protein restriction
Participants cannot be pregnant and will be withdrawn if become pregnant
Internet-device access is required

Information about the study, including study appointments, may be communicated to you by text messaging. Text messages are not secure (for example, encrypted in transit) so there is a risk, however slight, that the information sent to you could be read by someone that is not authorized to view the message. The text messages from the study staff will not mention you individually except by first name and will only include necessary information to coordinate appointments, visits, or surveys. If you do not wish to receive texts you may opt out and receive messages another way, such as only by phone. Please contact a study team member if you choose not to receive texts. Otherwise, in agreeing to receive communications via text messaging you accept the risk associated with using this communication tool. Standard text message rates may apply which will not be covered by the study.