TEMPO Study Completely AT-HOME FAQ
As an option to help lessen potential barriers for families who live far from a TEMPO study site or find it too challenging to go to a site, the study visits for TEMPO in the US can now be conducted through a combination of at-home and virtual visits.
Is this At-Home option right for my family?
If you are interested in having your child/care recipient participate in the TEMPO study but going to a study site may be too much of a barrier, this option may be for you.
Eligible participants living anywhere in the USA may participate.
How do I find out if my child/care recipient is eligible to participate in the TEMPO study?
Please complete and submit the Eligibility Questionnaire then choose the AT-HOME option under “Find a Study Center Near You". Once you click submit, your information will be sent to Science 37, the At-Home Site, and they will reach out to you.
How will I know if my child/care recipient qualifies upon assessment for the TEMPO study?
You will be asked questions about your child/care recipient and their symptoms of EDS and PWS. If the information suggests your child/care recipient is eligible, a Science 37 team member will then follow up with you to schedule a more detailed assessment to confirm your child/care recipient qualifies.
Will this impact the care of my child/care recipient by their current doctor?
No. Your child/care recipient will continue to receive care from their doctor as they currently do. The study visits are focused on conducting assessments for the study. The Science 37 study doctor may share relevant information with your child’s/care recipient’s current doctor.
Is this At-Home option available if my child/care recipient is already participating in the TEMPO study?
No, your child/care recipient will continue to participate at their current study site.
Will I have the same contact throughout the study as I would if taking my child/care recipient to a TEMPO clinic study site for visits?
Yes, we will try our best to keep the same study contacts throughout the study. However, similar to any study site, a new study contact may be used for coverage in case of sickness or out of office time.
What is the difference between “at-home” and “virtual” visits?
During an “at-home” visit, a study nurse will visit your home to conduct study assessments along with having some study staff who will join virtually on a call/video communication. During “virtual” visits, all assessments will be done virtually through a live video communication from your home.
Are the study procedures the same for the AT-HOME and in-clinic options?
Yes, the study procedures and assessments are the same, including obtaining blood and urine samples and electrocardiograms at all at-home visits.
Will I receive the study drug at home?
Yes, the study drug will be shipped to your home.
How will the study drug be shipped and how does it need to be stored?
The study drug will be shipped overnight by a courier service. The study drug should be stored at room temperature in your home.
Will I be trained to administer the study drug to my child/care recipient?
Yes, the study staff will provide instructions on how to properly dose the study drug.
How will I report results since all will be done in my home?
The information collected by you (the caregiver) for the study will be collected on an app on your phone or on a device provided to you by the Science 37 Clinical Research Coordinator. Other results will be reported by the home health nurse or by the Science 37 study doctor/Science 37 Clinical Research Coordinator who will meet with you virtually.
What if I have questions about my child’s/care recipient’s response to the study drug in between at-home or virtual visits?
Please reach out to your Science 37 Clinical Research Coordinator via phone, email or text message. They will be happy to answer any questions or concerns and will be sure to communicate them to the Science 37 study doctor. If needed, a virtual visit or phone call can be set up with the Science 37 study doctor as well.
Who is Science 37?
Science 37 is the name of the organization providing this AT-HOME option. Dr. Sara Trepanier is the lead study doctor for Science 37 for the TEMPO study, and she is joined by other doctors, nurses and staff to conduct the at-home and virtual visits for the study. Science 37 has conducted many at-home studies, including studies in children, adolescents and adults.
Download the AT-HOME Infographic
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Contact Science 37
If you are interested in the AT-HOME option or have more questions about this option, please contact Science 37.
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