Welcome to the interventional period of the ALL4IBD research program!
FAQs
Q: What interventions or tools will be provided during the interventional period of the study?
A: You will have access to various digital study tools, ePro’s (electronic patient reported outcomes), and PHQ’s (Patient Health Questionnaires). These may include web apps, telemedicine, and online health education.
Q: How often will I be required to participate in the study?
A: You’ll be sent links at predetermined intervals to complete questionnaires, and interventions will follow based on your responses. A short 2-4 item questionnaire will be sent to check your IBD symptoms and emotional health on a weekly basis and quarterly assessments to check your over all wellbeing.
Interventions will be based on your responses to electronic assessments.
Q: Why am I receiving a gift card for participating in the study?
A: The gift card is provided as compensation for your time and participation in the research study.
Q: How and when will I receive the Amazon gift card?
A: You will receive a $20 Amazon gift card as a digital code via text message upon completing your baseline assessment. An additional $20 gift card will be sent upon completion of the entire study (104 weeks). There’s also a chance to receive $10 gift cards monthly if you are among the top most engaged participants.
Q: What are ePro’s and PHQ’s, and how will they impact my participation?
A: ePro’s are electronic patient-reported outcomes, and PHQ’s are Patient Health Questionnaires. They involve completing questionnaires with no more than 2-4 questions, assessing aspects like stool frequency, bleeding, abdominal pain, and general well-being.
Q: How will my responses to questionnaires be used in the study?
A: Your responses will be used to evaluate the role of digital medicine study tools in managing your IBD status and assessing the ease of using these tools.
Q: What are the different assessments involved in the study, and how often will I undergo them?
A: The study involves assessments such as PRO2 and PRO3 measuring stool frequency, bleeding, and abdominal pain. The questionnaires will consist of no more than 2-3 questions. Timelines for assessments will be once a week.
Q: Can you provide an overview of the timelines for the different assessments in the study?
A: The study will have a specific timeline for each assessment. Please refer to the copy of informed consent sent to you email at the time of enrolment for additional details.
Q: How frequently am I expected to respond to the electronic questionnaires (PROs)?
A: You will receive links to complete electronic questionnaires at predetermined intervals which is once a week. The frequency depends on your symptoms, if your symptoms has changed with the week, please fill in the PRO again to inform that you are having active symptoms with your care team.
Q: Is there a specific schedule for responding to PROs, or can I choose when to complete them?
A: The study will have a predetermined schedule for sending PROs, but you can complete them at your convenience within 3 days, after 3 days you will receive an additional reminder to fill the PRO.
Q: Who will review my symptoms during the study?
A: The study team, including the Principle Investigator Dr. Sands and possibly other healthcare professionals, will be involved in reviewing and monitoring your symptoms throughout the study.
Q: Can I provide feedback on the study during my participation?
A: Yes, your feedback is valuable. You can share your thoughts or concerns with the study team at any time through the provided contact information, such as the email address ALL4IBD@ccf.org or the Research Coordinators.
In-addition to you can "reply 5" on the SMS message or use the "feedback survey" link from your email to share your feedback.
Q: How will my feedback be used in the study?
A: Your feedback will be considered in improving the study and its interventions. It helps in enhancing the overall experience and effectiveness of the research.
Q: Who is funding this research study?
A: This study is funded by the National Institute of Health (NIH) through the U01 grant.
Remember, these FAQs provide a general guide. It’s essential for participants to reach out to the study coordinators for more personalized information and clarifications based on the specific details of the research study.