Staff Profile
Emma Heslop
DMD Clinical Research Hub Manager
- Telephone: +44 (0) 191 241 8621
- Address: Newcastle University
International Centre for Life
Central Parkway
Newcastle upon Tyne
NE1 3BZ
Publications
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Articles
- Schiava M, Lofra RM, Bourke JP, Diaz-Manera J, James MK, Elseed MA, Malinova M, Michel-Sodhi J, Moat D, Ghimenton E, Mccallum M, Diaz CFB, Mayhew A, Wong K, Richardson M, Tasca G, Eglon G, Eagle M, Turner C, Heslop E, Straub V, Bettolo CM, Guglieri M. Functional abilities, respiratory and cardiac function in a large cohort of adults with Duchenne muscular dystrophy treated with glucocorticoids. European Journal of Neurology 2024, epub ahead of print.
- Gainotti S, Torreri P, Wang CM, Reihs R, Mueller H, Heslop E, Roos M, Badowska DM, de Paulis F, Kodra Y, Carta C, Lopez Martìn E, Rangel Miller V, Filocamo M, Mora M, Thompson M, Rubinstein Y, Posada de la Paz M, Monaco L, Lochmüller H, Taruscio D. The RD-Connect Registry and Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers. European Journal of Human Genetics 2018, 26, 631-643. In Preparation.
- Heslop E, Csimma C, Straub V, McCall J, Nagaraju K, Wagner KR, Caizergues D, Korinthenberg R, Flanigan KM, Kaufmann P, McNeil E, Mendell J, Hesterlee S, Wells DJ, Bushby K. The TREAT-NMD advisory committee for therapeutics (TACT): an innovative de-risking model to foster orphan drug development. Orphanet Journal of Rare Diseases 2015, 10, 49.
- Bladen CL, Rafferty K, Straub V, Monges S, Moresco A, Dawkins H, Roy A, Chamova T, Guergueltcheva V, Lynn S, Heslop E, Gainotti S, Taruscio D, Kirschner J, Verschuuren J, Bushby K, Beroud C, Lochmuller H. The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design and Utilization by Industry and Academia. Human mutation 2013, 34, 1149-57. In Preparation.
- Aartsma-Rus A, Cosigned by, Furlong P, Vroom E, van Ommen GJ, Niks E, Straathof C, Verschuuren J, Ferlini A, Hagger L, Heslop E, Karcagi V, Kirschner J, McCormack P, Moeschen P, Muntoni F, Ouillade MC, Rahbeck J, Rehmann-Sutter C, Rouault F, Sejersen T, Woods S. The risks of therapeutic misconception and individual patient (n = 1) “trials” in rare diseases such as Duchenne dystrophy. Neuromuscular Disorders 2011, 21(1), 13-15.
- Muntoni F, Contributors include, Bushby K, Heslop E, McCormack P, Woods S. The development of antisense oligonucleotide therapies for Duchenne muscular dystrophy: Report on a TREAT-NMD workshop hosted by the European Medicines Agency (EMA), on September 25th 2009. Neuromuscular Disorders 2010, 20(5), 355-362.
- Ball HL, Ward-Platt MP, Heslop E, Leech SJ, Brown KA. Randomised trial of mother-infant sleep proximity on the post-natal ward: implications for breastfeeding initiation and infant safety. Archives of Disease in Childhood 2006.
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Book Chapter
- Hedley V, Leary R, Sen A, Irvin A, Heslop E, Straub V. Performing clinical drug trials in children with a rare disease. In: Elke Gasthuys; Mark Turner; Lien Dossche; Karel Allegaert, ed. Essentials of Translational Pediatric Drug Development : From Past Needs to Future Opportunities. Amsterdam: Elsevier, 2024. In Press.
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Conference Proceedings (inc. Abstracts)
- Porter B, Cammish P, Turner C, Heslop E, Marini-Bettolo C. The UK Myotonic Dystrophy Patient Registry: A Key Tool in the Facilitation of Clinical Research. In: 12th UK Neuromuscular Translational Research Conference. 2019, Newcastle, UK.
- Porter B, Cammish P, Orrell R, Heslop E, Marini-Bettolo C. The UK FSHD Patient Registry: A Key Tool in the Facilitation of Clinical Research. In: 12th UK Neuromuscular Translational Research Conference. 2019, Newcastle, UK.
- Wells D, Heslop E, Csimma C, Straub V, McCall J, Nagaraju K, Wagner K, Caizergues D, Korinthenberg R, Flanigan K, Mendell J, Kelly M, Kaufmann P, McNeil E, Robertson A, Johnston L, Bushby K. The TREAT-NMD Advisory Committee for Therapeutics (TACT): An innovative de-risking model to foster orphan drug development. In: 20th International Congress of the World Muscle Society. 2015, Brighton, UK: Elsevier.
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Online Publication
- McCormack P, Woods S, Aartsma-Rus A, Hagger L, Herczegfalvi A, Heslop E, Irwin J, Kirschner J, Moeschen P, Muntoni F, Ouillade M-C, Rahbek J, Rehmann-Sutter C, Rouault F, Sejersen T, Vroom E, Straub V, Bushby K, Ferlini A. Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: "translating" the translational. 2013. Available at: http://dx.doi.org/10.1371/currents.md.f90b49429fa814bd26c5b22b13d773ec.
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Report
- Heslop E, Turner C, Irvin A, Muntoni F, Straub V, Guglieri M. Gene therapy in Duchenne muscular dystrophy: Identifying and preparing for the challenges ahead. Neuromuscular Disorders 2021, 31(1), 69-78.
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Review
- Thompson R, Johnston L, Taruscio D, Monaco L, Beroud C, Gut IG, Hansson MG, 't Hoen PBA, Patrinos GP, Dawkins H, Ensini M, Zatloukal K, Koubi D, Heslop E, Paschall JE, Posada M, Robinson PN, Bushby K, Lochmuller H. RD-Connect: An Integrated Platform Connecting Databases, Registries, Biobanks and Clinical Bioinformatics for Rare Disease Research. Journal of General Internal Medicine 2014, 29(3), 780-787.