Staff Profile

Based at the John Walton Muscular Dystrophy Research Centre, I am the PaLaDIn Senior Project Manager with responsibility for managing all aspects of Newcastle'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.

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

Home - Project PaLaDIn

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. Mapping of Data-Sharing Repositories for Paediatric Clinical Research—A Rapid Review. 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. Learning from Conect4children: A Collaborative Approach towards Standardization of Disease-Specific Paediatric Research Data. 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. Understanding paediatric data standards challenges through academia-industry partnerships: A conect4children (c4c) qualitative study. 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. Standardizing paediatric clinical data: The development of the conect4children (c4c) cross cutting paediatric data dictionary. 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. How Can a Clinical Data Modelling Tool Be Used to Represent Data Items of Relevance to Paediatric Clinical Trials? Learning from the Conect4children (c4c) Consortium. 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. The conect4children (c4c) Consortium: Potential for Improving European Clinical Research into Medicines for Children. Pharmaceutical Medicine 2021, 35, 71-79.
  • Leary R, Oyewole A, Bushby K, Aarstma-Rus A. Translational Research in Europe for theAssessment and Treatment for NeuromuscularDisorders (TREAT-NMD). Neuropediatrics 2017, 48, 211-220.
  • Verhaart IEC, Robertson A, Leary R, McMacken G, Konig K, Kirschner J, Jones CC, Cook SF, Lochmuller H. A multi-source approach to determine SMA incidence and research ready population. Journal of Neurology 2017, 264(7), 1465-1473.

• 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: 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. Data Standardization within Pediatrics: BPCRN’s analysis of trials identifying cross-cutting data points. 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. Paediatric-specific content in data standards for health. 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. The European Health Data Space needs to be relevant for paediatric data to support future medicines development for children – a conect4children viewpoint. conect4children, 2024. Available at: https://conect4children.org/2024/10/02/the-european-health-data-space/.
  • 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. Data Standards User Guide for Pediatrics (Paediatrics User Guide). Austin, TX, USA: Clinical Data Interchange Standards Consortium (CDISC), 2023. Available at: https://www.cdisc.org/standards/therapeutic-areas/pediatrics/pediatrics-user-guide-v1-0.
  • Palmeri A, Leary R, Sen A, Cornet R, Welter D, Rocca-Serra P. Creating a metadata profile for clinical trial protocols. Elixir FAIR Cookbook, 2023. Available at: https://faircookbook.elixir-europe.org/content/recipes/interoperability/c4c-clinical-trials.html#.