The first national database to gather information about multiple sclerosis was launched today, as a charity slammed the state of care for people with the disease.
A UK-wide register is being set up by the MS Society, allowing patients to enter a variety of information about their condition.
It is hoped that gathering this data will lead to improvements in care and research, in the same way that the cancer register did.
The campaign is being supported by Sir Muir Gray, chief knowledge officer of the NHS and Jeremy Chataway, consultant neurologist at the National Hospital for Neurology and Neurosurgery.
Mr Chataway said: “We have been in the dark for far too long about MS. The MS Register has the potential to change that, to revolutionise patient care and services for people with MS and to streamline the way we conduct research in this country.”
The MS Society claims that the UK is one of the worst countries in Western Europe in terms of treatment of the disease.
It says Britain comes only above Romania, Poland, Lithuania, Bulgaria and Estonia in terms of access to relevant medication.
Care is patchy, disability benefits have been cut which makes patients’ lives harder and there is only one MS specialist nurse per 454 people, the charity claims.
Chief executive Simon Gillespie explains: “Having MS can be devastating and robs some people of the best years of their lives. Having MS in the UK is currently an added disadvantage.
“Access to treatments and services for many is a daily battle and, in the current economic climate, things don’t look set to improve.
“We are confident, with the right investment, MS is beatable within our generation and that’s why the MS Society is launching the MS Register. The potential for change is profound. We urge everyone with MS to sign up. It’s time to put MS on the map.”
In five areas - Belfast, Edinburgh, Swansea, Nottingham and London - consultant neurologists will also add patients’ clinical data to the register as part of a three year trial.
The launch of the register coincides with the start of MS week today.