缅北禁地

Based at the John Walton Muscular Dystrophy Research Centre, I am the PaLaDIn Senior Project Manager with responsibility for managing all aspects of 缅北禁地's contribution to the consortium. PaLaDIn is a IHI funded European project which will improve decision making in rare neuromuscular diseases through the implementation of an innovative data platform; The Interactium. The interactium will link clinical focussed data from registries with data derived directly from patients through patient reported data items and wearable devices.

缅北禁地 is the lead on two work packages of the project and I am a member of the Project Steering Committee and Project Management Team..

I teach about the importance of networking in rare diseases on the following course. 

MMB8036 : Therapy Development for Rare Diseases: the neuromuscular paradigm

• Articles

  • Felisi M, Bonifazi F, Toma M, Pansieri P, Leary R, Hedley V, Cornet R, Reggiardo G, Landi A, D'Ercole A, Malik S, Nally S, Sen A, Palmeri A, Bonifazi D, Ceci A. . Data 2024, 9(4), 59.
  • Sen A, Hedley V, Degraeuwe E, Hirschfeld S, Cornet R, Walls R, Owen J, Robinson PN, Neilan EG, Liener T, Nisato G, Modi N, Woodworth S, Palmeri A, Gaentzsch R, Walsh M, Berkery T, Lee J, Persijn L, Baker K, An Haack K, Segovia Simon S, Jacobsen J, Reggiardo G, Kirwin M, Trueman J, Pansieri C, Bonifazi D, Nally S, Bonifazi F, Leary R, Straub V. . Data 2024, 9(4), 55.
  • Sen A, Palmeri A, Lee J, Hedley V, Thuet J, Lignon P, Cotonnec V, Leary R, Nally S, Straub V. . International Journal of Health Planning and Management 2022, 38(2), 277-543.
  • Sen A, Hedley V, Owen J, Cornet R, Kalra D, Engel C, Palmeri A, Lee J, Roze J, Standing J, Warris A, Pansieri C, Leary R, Turner M, Straub V. . Journal of the Society for Clinical Data Management 2022, 2(3), 4.
  • Amadi C, Leary R, Palmeri A, Hedley V, Sen A, Siddiqui RQ, Kalra D, Straub V. . Applied Sciences 2022, 12(3), 1604.
  • Turner MA, Hildebrand H, Fernandes RM, de Wildt SN, Mahler F, Hankard R, Leary R, Bonifazi F, Nobels P, Cheng K, Attar S, Rossi P, Rocchi F, Claverol J, Nafria B, Giaquinto C. . Pharmaceutical Medicine 2021, 35, 71-79.
  • Leary R, Oyewole A, Bushby K, Aarstma-Rus A. . Neuropediatrics 2017, 48, 211-220.
  • Verhaart IEC, Robertson A, Leary R, McMacken G, Konig K, Kirschner J, Jones CC, Cook SF, Lochmuller H. . Journal of Neurology 2017, 264(7), 1465-1473.

• Book Chapter

  • Hedley V, Leary R, Sen A, Irvin A, Heslop E, Straub V. . In: Elke Gasthuys; Mark Turner; Lien Dossche; Karel Allegaert, ed. Essentials of Translational Pediatric Drug Development: From Past Needs to Future Opportunities. Amsterdam: Academic Press, 2024, pp.483-507.

• Conference Proceedings (inc. Abstract)

  • Degraeuwe E, Christiaens D, Sen A, Vanderschaeghe S, Persijn L, Hoste L, Nuytinck L, Palmeri A, Vande Walle J, Raes A, Leary R, Turner M. . In: BVK/SBP Congress 2024. 2024, Antwerp.

• Editorial

  • Turner M, Kalra D, Cornet R, Palmeri A, Sen A, Owen J, Pansieri C, Lee J, Hedley V, Nally S, Bonifazi F, Leary R, Straub V. . Archives of Disease in Childhood 2025, 110(3), 177-179.

• Online Publications

  • Palmeri A, Kalra D, Cornet R, Sen A, Lee J, Hedley V, Trueman J, Nally S, Leary R, Turner MA, Straub V. . conect4children, 2024. Available at: .
  • Owen J, Aurich B, Bae H, Cavallaro G, Cornet R, Degraeuwe E, Engel C, Felderhoff U, Franz A, Gandini P, Hedley V, Hung A, Kalra D, Karadag B, Leary R, Luethy T, Malik S, Marshall R, Medisetti Y, Nally S, Palmeri A, Peddineni M, Presijn L, Rasegaonkar S, Schaufelberger D, Scott K, Sen A, Sokillik C, Sridharan A, Stauch A, Thuet J, Turner M, Urru S, Vanderchaeghe S, Walsh M, Woodworth S, Yoon J. . Austin, TX, USA: Clinical Data Interchange Standards Consortium (CDISC), 2023. Available at: .
  • Palmeri A, Leary R, Sen A, Cornet R, Welter D, Rocca-Serra P. . Elixir FAIR Cookbook, 2023. Available at: .