Staff Profile
Background
I work as the Project Manager for the DMD Hub Central Recruitment Pilot Project.
The DMD Hub Central Recruitment Pilot Project is looking to create a national contact list of children and adults with Duchenne Muscular Dystrophy who are interested in participating in research studies. Over the past 10 years, there has been an increased number of natural history studies and clinical trials taking place to better understand Duchenne Muscular Dystrophy. Due to the complexity of the disease and of setting up sites to conduct research studies, they often only take place at a limited number of sites across the UK. This can create some challenges to clinicians, people diagnosed with Duchenne Muscular Dystrophy and their families.
The objective of the DMD Hub Central Recruitment Pilot Project is to identify if there is a benefit to people diagnosed with Duchenne Muscular Dystrophy and trial sites in maintaining a centrally coordinated national recruitment contact list of children and adults with Duchenne Muscular Dystrophy who are interested in participating in research studies in the UK.
The DMD Hub is a network of trial sites with trained staff which are funded to carry out clinical trials for Duchenne Muscular Dystrophy. It uses existing UK clinical trial expertise, to provide a central resource offering advice, guidance and training to sites less experienced in running Duchenne Muscular Dystrophy clinical trials. Ultimately, the mission of the DMD Hub is to ensure all people with Duchenne Muscular Dystrophy, both children and adults, have access to clinical research trials.
Publications
- Pogoryelova O, Cammish P, Skrinar A, Rao S, Lochmuller H, Kakis E. GNE myopathy worldwide epidemiology based on the patient self-reported registry. In: 20th International Congress of the The World Muscle Society. 2015, Brighton, UK: Elsevier.
- Pogoryelova O, Cammish P, Mansbach H, Argov Z, Nishino I, Skrinar A, Chan Y, Nafissi S, Shamshiri H, Kakkis E, Lochmuller H. Phenotypic stratification and genotype–phenotype correlation in a heterogeneous, international cohort of GNE myopathy patients: First report from the GNE myopathy Disease Monitoring Program, registry portion. Neuromuscular Disorders 2018, 28(2), 158-168.
- Ricci G, Cammish P, Siciliano G, Tupler R, Lochmuller H, Evangelista T. Phenotype may predict the clinical course of facioscapolohumeral muscular dystrophy. Muscle & Nerve 2019, 59(6), 711-713.
- Banerjiab CRS, Cammish P, Evangelista T, Zammita PS, Straub V, Marini-Bettolo C. Facioscapulohumeral muscular dystrophy 1 patients participating in the UK FSHD registry can be subdivided into 4 patterns of self-reported symptoms. Neuromuscular Disorders 2020, 30(4), 315-328.
- 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.
- 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.