Meet the New UK SMA Patient Registry Curator!
15 June 2017
SMA Support UK funds the UK SMA Patient Registry - a database of genetic and clinical information (or data) about people affected by SMA. There are a number of benefits to signing up to the Patient Registry, including being told about clinical trials and other studies that you may wish to join.
Jo Bullivant has recently taken over as the Registry Curator and here she explains a bit more about her background and her role as curator:
My name is Jo Bullivant and I’m the new Curator of the UK SMA Patient Registry, taking over from Agata Robertson. I work in the John Walton Muscular Dystrophy Research Centre at Newcastle University, as part of the TREAT-NMD neuromuscular network. I am also the Curator of the Myotubular and Centronuclear Myopathy Patient Registry, which I really enjoy, so I’m very excited to also be taking on the UK SMA Patient Registry work.
I’ll be responsible for the day to day running of the registry so I will be your first point of contact for any questions or comments. It’s always good to hear feedback from registry participants so please don’t hesitate to get in touch if needed (contact details below). It’s also my job (and will be one of my first priorities) to make sure all of the data in the registry is complete, accurate and up to date. So if you haven’t updated your details for a while, or if there is any information missing from your registration, you will probably be hearing from me soon!
UK SMA Patient Registry Curator
John Walton Muscular Dystrophy Research Centre
Institute of Genetic Medicine
International Centre for Life
Newcastle upon Tyne, NE1 3BZ
T: 0191 241 8640