← Back to Opportunities
Your experience matters
Share Your Experience with TGCT
Help us make research more human
– by sharing your story
Your experience matters
By participating in this international Patient Preference Study,
you can help researchers and regulators better understand what matters most
to people living with Tenosynovial Giant Cell Tumour (TGCT).
30–45 minute
online survey
Compensation
provided
Available
across Europe
Completely
confidential
Make Your Voice Count
People living with Tenosynovial Giant Cell Tumour (TGCT) have unique experiences that can help improve future healthcare, research and treatment development.
PiCC United is inviting eligible adults with TGCT to take part in an international patient preference study. By sharing your experiences and treatment preferences, you will help researchers, healthcare decision-makers and regulators better understand what matters most to people living with TGCT.
Clinical outcomes are important, but they are only part of the picture. Increasingly, healthcare authorities, HTA bodies and regulators also want to understand how treatments affect patients’ daily lives, which outcomes they value most, and the trade-offs they are willing to make.
Participants who complete the survey will receive a €75 honorarium as a thank you for their time, experiences and valuable contribution.
Your voice can help shape future treatment development and decision-making in healthcare.
What happens after I click “Participate”?
After confirming your eligibility, you will first be asked to complete the PiCC United electronic consent process.
You will then be securely redirected to the study platform (Welphi), where you will be presented with the IRB-approved Participant Information Sheet and Informed Consent Form before you begin the study questionnaire.
Once you have completed the informed consent process, you will continue directly to the study questionnaire.
After completing the questionnaire, you will automatically return to the PiCC United website, where you can provide your payment details or choose to donate your honorarium before reaching the final confirmation page.
Frequently Asked Questions
This study is open to adults (18 years or older) who have been diagnosed with Tenosynovial Giant Cell Tumour (TGCT) and are currently living with symptoms related to their condition.
Participation is open to people across Europe who are able to complete an online questionnaire and provide informed consent.
You will complete an online questionnaire about your experiences and treatment preferences.
The online questionnaire takes approximately 30–45 minutes to complete.
You may complete it at a time that suits you best, using a computer, tablet or smartphone with an internet connection.
The study is conducted by Decision Eyes, an independent healthcare research consultancy with extensive experience in patient preference research.
PiCC United supports patient outreach and engagement to help ensure that the patient voice is represented throughout the study.
Yes.
Your personal information will be handled securely and confidentially in accordance with applicable data protection laws (GDPR). Only authorised members of the study team will have access to your personal information, and your survey responses will be analysed without identifying you personally.
We’re here to support you throughout the process – and if you have any questions about payment, you’re always welcome to reach out.
Read more here
Yes.
Email us at lsn@piccunited.org to get started or ask questions.
.
Do you have any questions?
Who can I contact?
If you have any questions about the study or the participation process, we are happy to help.
Please contact PiCC United at: lsn@piccunited.org
We will be pleased to answer your questions or direct you to the appropriate member of the study team if needed.
We want every participant to feel informed, comfortable and supported before deciding whether to take part.
