GSD1a Patient Research
Please find below a link to an invitation for UK families affected by GSD1a to take part research by Liberating Research to improve understanding of the impact of the condition.
Who can participate?
People living with GSD1a and their partners / carers / loved ones.
What is it?
A 90 minute telephone interview (access to a computer with internet access is required). It will cover your experiences and current attitudes, drug treatments, your interaction and relationship with healthcare professionals and the support services and information that are available to you. All your details are kept confidential. At least 10% of your earnings will be donated to your choice of our registered charities (you can donate more if you wish).
What will you earn?
Link for further information and to register:
Request for GSD1a Survey Volunteers
A company would like to interview people living with GSD1a and their care givers to understand the impact of GSD1a on their lives.
The information, which would be anonymized, would be used by a pharmaceutical company to develop materials to support people living with GSD1a.
The interview would be approximately 90 minutes. Interviewees will be compensated for their time if they consider this appropriate (approximately $150 USD).
The discussion will explore topics such as
• GSD1a diagnosis
• relationships with care teams
• sources of knowledge
• feeding routines
• lifestyle impacts
• disease burden
• understanding and sentiments toward gene therapy, etc.
If you are interested in participating, please contact ZS Associates at email@example.com.