Bainbridge Ropers Syndrome – A Natural History Cohort Study
Currently enrolling participants
About the study
You are invited to participate in Bainbridge Ropers syndrome natural history study which is being conducted by student researchers from the University of Newcastle supervised by Associate Professor Linda Campbell, Associate Professor Tracy Dudding-Byth from the University of Newcastle, Australia, alongside Dr Natasha Ludwig from the Kennedy Krieger Institute.
What is the research study about?
This study will investigate the severity of symptoms experienced by people with Bainbridge Ropers syndrome and the effects these symptoms have on both the patient and their carers. This study aims to help inform clinical management of people with Bainbridge Ropers syndrome (BRS).
Participation in the research?
This research study is recruiting 30 English speaking people who care for a family member with a genetically confirmed diagnosis of BRS.
What does participation involve?
If you agree to participate, you will be asked to complete the following research activities:
Take part in a Zoom interview lasting approx. 60 minutes.
During this interview you will be asked about your experience caring for a person with Bainbridge Roper’s Syndrome with a particular emphasis on the impact of symptoms on individuals with BRS and their unmet needs and the impact on you, and your family, as a carer.
How to enroll
For more information about this research project and your potential involvement, please contact: one of the Chief Investigators/Supervisors at: