The eNID project - What is it? Where are we at?
There has been steady conversation about the eNID project for four years now so I imagine that many are now a little lost in regard to the details.
eNID stands for "electronic Neuro-Immunology Database”. It is a way for the Specialist Doctors to gather detailed and progressive information about a patient's history when managing this chronic condition over many years. The combined database has the potential to explore treatment and disease trends using de-identified information. As myasthenia is a rare disease and the number of patients each Neurologist may see during their working lives can be small, utilising modern technology allows them greatest access to information.
Multiple Sclerosis patients are familiar with this programme and it is because of this that the Myasthenia community have been offered the opportunity to access this technology also. Financially, this offer has been a significant gift to our small cohort. MSBase, a Melbourne based not-for-profit organisation have developed the technology to manage the large volumes of data involved. Thanks to engagement with MSBase by our leading Specialists, Dr. Katherine Buzzard, Assoc. Prof. Stephen Reddel and Dr. Stefan Blum, and with support from the Myasthenia community, a unique platform has been created within MSBase for people with Myasthenia. The complexity of operating this database and then incorporating a second condition should not be underestimated and the challenges have resulted in time delays. To make this data most valuable, information is to be collected extensively. For MS patients, this means worldwide participation. For myasthenia, the focus is initially on the Australian and New Zealand patient base.
There has been great excitement over the past months as Dr Buzzard and Dr Reddel have allocated a significant amount of their time to getting the ‘coding’ underway and fine tuned. IE - what are the critical questions; how are the trends displayed; how does the technology handle these requirements. The project is now ready for testing in the clinics and this is happening at a selection of sites. It is hoped that a wider uptake will occur after a launch around October this year. Neurologists wishing to participate will need to make application and seek the necessary ethics approval but Dr Buzzard is hoping that 500 patients will be registered by the end of the year. The MAA will keep you informed regarding progress at each step. We are very confident that this new technology will support best practice medicine for people with Myasthenia and be able to support discussions with government in regard to care plans for our community.
Suffering in Silence! www.cslbehring.com/suffering_in_silence
The Economist Intelligence magazine conducted a survey across the Asia Pacific region to better understand care for people with rare diseases. It was sponsored by CSL and reported on in a webinar discussion with key speakers from Australia, Singapore and Hong Kong. A White Paper was subsequently produced. Accessing this discussion has proved very insightful for the MAA Board. The data showed how challenging it is to recognise and comprehensively treat rare diseases. Government approaches vary greatly though there is an appetite to find solutions and provide improved coordinated care. The significant role of support organisations in bringing forward best practice policies and services was clear. It will be patient based discussion which will bring awareness, education and care plans. For the MAA to be most effective, we will need to build strong relationships with all parties who offer our community care and governing policy. Communicating effectively will be critical and having meaningful data will be an important part in these conversations. The MAA are keenly exploring the ways in which data can be effectively and efficiently gathered. This will occur in a range of methods and will include surveys completed by the Doctors and also by the patients. Partnering by as many people diagnosed with MG as possible will bring the greatest results for us all.
Susan White - MAA Chairperson