Staff Profile
Heather Hilsden
Project Manager Jain Foundation Natural History Study
- Email: heather.hilsden@ncl.ac.uk
- Telephone: 241 8941
- Address: The John Walton Muscular Dystrophy Research Centre
International Centre for Life
Central Parkway
Newcastle upon Tyne
NE1 3BZ
Background
I coordinate the International Clinical Outcome Study for Dysferlinopathy, affectionately known as the Jain COS Study. Further I support the John Walton Muscular Dystrophy Research Centre PIs develop and deliver international projects and initiatives related to the Limb Girdle Muscular Dystrophies.
Publications
- Paradas C, Moore U, James M, Mayhew A, Azzabou N, Torron RF, Reyngoudt H, Smith F, Harris E, Bettinson K, Hilsden H, Jacobs M, Feng J, Cnaan A, Rufibach L, Eagle M, Blamire A, Carlier P, Bushby K. Clinical outcome study for dysferlinopathy: One-year follow-up. In: 21st International Congress of the World Muscle Society. 2016, Granada: Elsevier.
- Mayhew A, James M, Eagle M, Bladen C, Lofra RM, Bettinson K, Hilsden H, Harris E, Bushby K, Rufibach L, Jain COS Consortium. Preparation of a disease specific functional measure suitable for trials in dysferlinopathy. In: 20th International Congress of the World Muscle Society. 2015, Brighton, UK: Elsevier.
- Moore UR, Jacobs M, Fernandez-Torron R, Jang J, James MK, Mayhew A, Rufibach L, Mittal P, Eagle M, Cnaan A, Carlier PG, Blamire A, Hilsden H, Lochmüller H, Grieben U, Spuler S, Rocha CT, Day JW, Jones KJ, Bharucha-Goebel DX, Salort-Campana E, Harms M, Pestronk A, Krause S, Schreiber-Katz O, Walter MC, Paradas C, Hogrel J-Y, Stojkovic T, Takeda S, Mori-Yoshimura M, Bravver E, Sparks S, Diaz-Manera J, Bello L, Semplicini C, Pegoraro E, Mendell JR, Bushby K, Straub V. Teenage exercise is associated with earlier symptom onset in dysferlinopathy: a retrospective cohort study. Journal of Neurology, Neurosurgery and Psychiatry 2018, 89(11), 1224-1226.