Study Title: Research Ready: Building a Strong PCOR Foundation in the Glut1 Deficiency Community
Principal Investigator (Person in Charge of the study): Sandra Ojeda, PhD
Phone Number: 281-851-0295
Email:  [email protected]

What is the purpose of this project?
The aim of the Research Ready Series will be to provide training and activities to help build a strong, patient-centered research foundation in our community to help participants:

• better understand how research works
• better understand what makes research results trustworthy
• make more informed decisions about participating in research
• make more informed decisions about your own care

Why are we asking you to take part in this project?
You are being asked to take part in this project because you are a stakeholder member of the Glut1 Deficiency community as either a patient, caregiver or parent, healthcare professional, researcher, or industry representative. Participating in this training and the related activities will increase research literacy and help contribute to the aim of creating a strong, patient-centered research foundation in our community.

What do I have to do in this project?
If you take part in this project, you will:

• Read the PDF reference document provided to you prior to the training session - The PCORI Approach to Patient Centered Outcomes Research (approximately 10 minutes)
• Complete the pre-test provided to you prior to the training session (20 questions – approximately 10 minutes)
• Attend and participate in the training session (approximately 2 hours)
• Complete the post-test provided to you after the training session (20 questions – approximately 10 minutes).
• Complete the anonymous patient voice priorities survey after the training session (15 questions – approximately 10 minutes).
• Provide necessary details to process any stipend that you are eligible to receive (approximately 5 minutes).

Will anything bad happen to you?
Some of the questions might might be hard to answer. You can choose to stop participating at any time.

Will this project help you or others?
There is no guarantee the project will help you, but this project will provide you with foundational knowledge about the research process that may help you and others be more informed and engaged in decision making about your own healthcare and options.

Who will see the information collected about you?
The study team will see the information collected about you, including your registration information and your pre and post test results. Bookkeeping staff will see details you provide about processing any stipends you are eligible to receive. All information collected will be kept confidential within the study team and your identifying data and information will not be shared. Reports about pre and post test results associated with this project may be published and used in presentations, but only by combining information about overall results, not individuals.

Do you get paid for participating in this project?
You will be eligible to receive a participation stipend of $100 for completing all of the components of the project. If you are traveling to an in-person training session and need hotel accommodations in order to participate, you will be eligible to receive a $400 travel stipend (one per family).

A limited number of stipends are available for each training session and will be given on a first-come first-served basis. If you register for a training session and apply for a stipend, you will be notified in advance of the session if you have been awarded one.

Will it cost anything to participate in the project?
There will be no costs for you to participate in virtual training sessions. You will pay a $25 registration fee for the in-person session, although you may apply for and receive a registration fee waiver.

Do you have to participate in the project?
You do not have to take part in the project.

What if I have questions?
You can ask any questions that you have about the project. If you have a question later, you may call the person in charge of the project at 281-851-0295 or email at [email protected].

If you have issues taking part in this project and want to talk to someone who is not the person in charge of it, you may contact Castle Institutional Review Board (Castle IRB) at 888-442-2472 extension 2 or [email protected].