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Authors
Stimpson, Georgia
Raquq, Sarah
Chesshyre, Mary
Fewtrell, Mary
Ridout, Deborah
Sarkozy, Anna
Manzur, Adnan
Ayyar Gupta, Vandana
De Amicis, Ramona
Muntoni, Francesco
Baranello, Giovanni http://orcid.org/0000-0003-4871-6692
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Ambegaonkar, Gautam
Alhaswani, Zoya
Baxter, Alex
Childs, Anne-Marie
Chow, Gabby
De Goede, Christian
Fernandez, Miguel
Gibbon, Frances
Gowda, Vasantha
Guglieri, Michela
Hart, Tony
Hewawitharana, Gemunu
Horrocks, Iain
Hughes, Imelda
Illingworth, Marjorie
Krishnakumar, Deepa
Majumdar, Anirban
Marini-Bettolo, Chiara
Ong, Min
Parasuraman, Deepak
Ramdas, Sithara
Servais, Laurent
Skone, Kate
Spinty, Stefan
Stephens, Elma
Straub, Volker
Tirupathi, Sandya
Thomas, Neil
Willis, Tracey
White, Cathy
Wong, Jarod
Wraige, Elizabeth
Vijayakumar, Kayal
Naismith, Karen
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Funding
Funding for this research was provided by:
Muscular Dystrophy UK (16NMDB-DB60-0004-5)
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Article History
Received: 4 October 2021
Accepted: 19 December 2021
First Online: 24 January 2022
Declarations
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: The Northstar project is a natural history registered audit of the National Neuromuscular Database, where data from DMD boys has been collected since 2016, therefore, ethics approval was not required. We are now seeking ethics approval (IRAS Project ID: 242567) as it allows us to establish the network as a research project to collect. Approval has been given via the Caldicott guardian at GOSH and at the audit committee of each trust at the individual centres involved.
: Not applicable.
: GS, SR, MC, MF, DR, VAG, RDA, AS and AM have no conflict of interest. FM is supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre and has received speaker and consultancy honoraria from Sarepta Therapeutics, Avexis, PTC Therapeutics, Roche and Pfizer. The views expressed in this paper are his and not necessarily those of the NHS, NIHR or the department of health. GB is PI of clinical trials Sponsored by Pfizer, NS Pharma, and Reveragen, and has received speaker and/or consulting fees from Sarepta, PTC Therapeutics, Biogen, Novartis Gene Therapies, Inc. (AveXis), and Roche and has worked as principal investigator of SMA studies sponsored by Novartis Gene Therapies, Inc., and Roche.
