A Survey to Assess Participants', Caregivers', and Nurses' Use and Understanding of Educational M… (NCT05669729) | Clinical Trial Compass
Not Yet RecruitingNot Applicable
A Survey to Assess Participants', Caregivers', and Nurses' Use and Understanding of Educational Material on Velaglucerase Alfa (VPRIV) Home Infusion
60 participantsStarted 2026-09-30
Plain-language summary
The main purpose of this survey is to determine participants', caregivers', and nurses' understanding and use of educational materials (EM) on VPRIV home treatment. EM includes an infusion diary and guide and an emergency plan related to VPRIV infusion given at home for Gaucher disease. The survey is conducted in European countries.
Data will be collected directly from participants, caregivers, and nurses in form of a questionnaire, electronic or paper.
Who can participate
Age range
2 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion criteria
. Gaucher disease participants who receive VPRIV® for home infusion and their caregivers.
. Home infusion nurses administering VPRIV® to participants with Gaucher disease at home.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Percentage of Participants and Caregivers Aware of Educational Material (EM)
Timeframe: Day 1
2
Percentage of Participants and Caregivers who Understand the EM
Timeframe: Day 1
3
Percentage of Participants and Caregivers who Utilize the EM
Timeframe: Day 1
4
Percentage of Home Infusion Nurses Aware of the EM
Timeframe: Day 1
5
Percentage of Home Infusion Nurses who Understand the EM
Timeframe: Day 1
6
Percentage of Home Infusion Nurses who Utilize the EM