Dietitian/nutritionists often have patients with UCD eat less protein so that less ammonia is formed from food protein. One of the ways that we measure how much protein patients eat is a 3-day diet record. However, 3-day diet records are cumbersome to fill out and they are not very accurate. We do not have a good way to measure how much protein and calories people with UCDs eat.
The purpose of this research study is to test a new method to measure food intake using smart phone photos of your food before and after meals. We will compare the smart phone food photos to a 3-day diet record and we will measure how many calories you burn.
This study is for all urea cycle disorders.
Overall goals of nutrition management of urea cycle disorders (UCDs) are to prevent hyperammonemia, normalize plasma amino acids, and promote normal growth and development in children and infants with UCDs. Dietary intake has historically been measured by 3-day diet records, 24-hour recalls or food frequency questionnaires. Multiple studies have demonstrated these methods are inaccurate, time-consuming and cumbersome for the participant. This pilot study proposes to validate a novel method using food photography to decrease underreporting and improve the accuracy of dietary intake measures, a key component of the treatment for patients with UCDs.
About this Study
This is an observational study that will enroll 10 adolescent or adult patients currently enrolled in the longitudinal UCDC study 5101. Five subjects will be enrolled at OHSU and five at Children’s National Hospital.
If you decide to be part of this study, we will look at your medical records and determine if you are eligible to participate. You will drink a special water and collect samples of your urine. You will take photos of the food you eat and keep a record of the food you eat for three days. You will send the urine samples and food records to the study investigators. You may need to communicate with study investigators so that they understand the food record and/or photos. Your parent or caregiver can help you with these steps. Participation in this study is two weeks long.
To be eligible to participate, the following criteria must be met:
- Enrolled in the UCDC longitudinal study, UCDC 5101, who agreed to be contacted about additional research projects
- Own a personal smartphone
- 16 years of age or older
- If participant needs assistance with study procedures, a consenting caregiver can collect dietary intake data and doubly labeled water urine samples for the protocol
- Rudimentary understanding of English for instructions and commands on the app
How to participate
In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please us the information to the right to inquire about participation.