Help us learn about life with a rare bone disease
Newcastle University research fellows are seeking participants in a new research study!
The purpose of the study is to explore the views and preferences of young people and their parents or guardians about available treatments for rare bone conditions known as skeletal dysplasias, such as MCDS.
If you are affected by a skeletal dysplasia (either as a person living with a condition, or the parent or guardian of such a person) and would like to take part in the study, you’ll be invited to join a group discussion (called a focus group) that will be conducted using an online meeting programme, such as Skype, Microsoft teams, Zoom, Starleaf etc.
You will be asked a series of questions by the researcher about your experiences with skeletal dysplasia and any treatments you have been offered. The study is expected to take no longer than 60 minutes of your time and your responses will help to shape the design of an online survey, which will be used to help healthcare policy members make decisions about treatment and services for skeletal dysplasia.
Want to learn more?
Head over to our Get Involved page for a list of conditions that are eligible for this study. If you live with (or care for someone who lives with) one of the conditions on the list, then you’re eligible!
If you have any questions or would like to sign up for the study, please email Blayne at
Thank you for your kind consideration and we hope to see you soon!
