A study is currently being undertaken by the COHERE team at the Royal Manchester Children’s Hospital. ‘COHERE’ is an abbreviation of Core Outcome Set for Head, nEck and REspiratory disease in MPS II.
This research is aiming to highlight the need to consistently measure the impact of MPS II (Hunter Disease) on the head, neck and respiratory system. Even with Enzyme Replacement Therapy, airway and respiratory complications are a significant cause for concern for our MPS II patients.
We would be very grateful if you could please spare a few minutes to complete the survey that is best suited to you.
· COS for up to 11-year-olds – this survey is for parents, clinicians and scientists
· COS for 12 to 25-year-olds – this survey is for patients [16-25 years old], parents, clinicians and scientists
· COS for 12 to 25-year-olds – this survey is for patients aged 12 to 15, who need their parent to register
We are appealing to our MPS II community to help this project by completing the questionnaire below so that we can consistently identify the most important outcomes. This will help the doctors and scientists gather the information that shows how well treatments work and support not only current treatments but also the development of new treatments.
Who can take part?
Individuals with MPS II, aged 0-years-old to 25-years-old
Parents/carers of individuals with MPS II
Clinicians responsible for direct care and management of at least two individuals with MPS Type II in the last 12 months
Scientists who have worked in the field of MPS II within the last five years.
Further information about the study can also be found here.
Please also share the link with other MPS II families, in the UK and internationally, and any clinical doctors you know who support more than two patients with MPS II. We need as many people as possible to complete this survey.
Thank you for your support with this important research.
Please email COS4MPS2@mft.nhs.uk for more information about this study.