The Multiple Sclerosis Society of Malta has identified the urgent need of data collection in the field of Multiple Sclerosis.
The MS Society of Malta is one of 43 member associations from 37 countries in Europe that represent 1 million patients fighting MS. These countries collect data about their patients’ needs and progress through the disease. This data is compared from one country to another and the needs of the patient are assessed. As yet we are dependent on assessment of data collected in other countries such as England and Italy.
The Importance of collecting data.
There are many reasons for the collection of data. The immediate recognised need is an accurate figure of the actual number of patients with MS in Malta. We talk of approximately 450 patients when in this day and age we should have accurate numbers. Not all MS patients are processed through a centralised state system. There are a number of private patients and a number of expatriates on the island who return to their country for their check ups yet needing their daily medical care in Malta.
With the development and access to newer, more efficacious medicine it is identified that the medication needs to be monitored. Doctors need to see the individual’s progress through the disease to assess what medication is working and how best to progress. This is an ongoing assessment that as MS Society we do not at this stage envision happening. Ideally it should be done through an MS nurse programme.
As in the treatment of a patient, data collecting should be patient centered with different entities collecting data into a central pool. The MS Society’s project will be just the beginning. This information should be available to all stakeholders concerned. The Multiple Sclerosis Society of Malta needs this information to have a stronger voice in society when talking of the patient’s needs.
Initially the MS Society is looking at collecting basic information. This will put us at an even platform with the rest of the EMSP members. The aim is that such a project will lead to greater exposure of Multiple Sclerosis and the needs of MS patients in Malta. This in turn will lead to further sponsorships and funding. We are looking at working in collaboration with the University of Malta who are more experienced in data collection whilst we have a wealth of experience as patients. We are aiming for this initial project to cost €5000. This will begin with a survey of basic questions for the patients to answer. It will map out a clearer picture of what is actual and indicate any areas for further clarity which will be identified and dealt with in future research.
The aim of this research is to have a beneficial financial impact, medication costs money and the more tailored a treatment is the more cost effective it becomes. When a patient retains their health and work productivity they are less of a financial burden to the state. In this case the state becomes a stakeholder too.
Project expires at 4:00pm on Monday April 3rd, 2023