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Authors
McMullan, Julie https://orcid.org/0000-0001-8566-4807
Crowe, Ashleen L.
Bailie, Caitlin
Moore, Kerry
McMullan, Lauren S.
Shamandi, Nahid
McAneney, Helen
McKnight, Amy Jayne
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Funding
Funding for this research was provided by:
Medical Research Council (MC_PC_16018)
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Article History
Received: 30 May 2020
Accepted: 24 September 2020
First Online: 9 November 2020
Ethics approval and consent to participate
: This study has ethical approval from QUB’s School of Medicine, Dentistry and Biomedical Sciences research ethics committee, Northern Ireland. Consent to take part in the survey was explicitly given by all rare disease collaborative groups by actively ticking a ‘consent box’ before they could proceed with the online survey. Consent for the interviews was collected via a hard copy form which was signed by the interviewee representing the rare disease collaborative group.
: Not applicable.
: The authors have no competing interests to declare. AJM is a former board member and HM an existing board member of the NIRDP.
