Multiple Sclerosis Registries: Value, current efforts, and glimpse from Greece

Are you curious about how Multiple Sclerosis (MS) registries can benefit the MS community? Discover the efforts of EMSP and MS Societies in Greece. In this article, we’ll discuss the value of MS registries, the initiatives EMSP is leading on with member organisations, and updates from two MS Societies in Greece, The Hellenic Federation of Persons with MS and the Greek MS Society, both relentlessly working to establish MS registry in Greece. So what are you waiting for? Read on to find out more.

Why are MS registries important and why is this a priority of various MS Societies across Europe?

Registries for MS are databases that collect and store information about people who have been diagnosed with MS. These registries include information about the diagnosis, treatment, and other aspects of the disease where data is collected longitudinally, following up with people with MS.

MS registries can be led by healthcare organisations, academic/research institutions, patient organisations, governmental departments, or through non-governmental organisations. There are various factors that allow one or the other to lead on a registry, some of which are the purpose of the registry, the capacity of an institution, sustainability and also laws of the country. Depending on the nature of a registry, data can be collected by people with MS themselves (also called patient-reported), or by health care professionals and researchers.

Registries may have several purposes, hence, MS Societies across Europe are prioritizing having national MS registries.

• Firstly, the information helps researchers better understand the disease and its impact on patients, especially on their quality of life, aiming to understand unmet needs to develop new treatments, improve existing ones, and inform clinical practice guidelines.
• Secondly, registries can help patients and healthcare providers make more informed decisions about treatment options. For example, if a registry shows that a certain medication is particularly effective in a specific group of patients, healthcare providers may be more likely to prescribe it to those patients.
• Finally, registries can be used to monitor the safety of treatments and identify potential adverse events. By tracking patients over time, researchers and healthcare providers can identify patterns and trends, which can help them better understand the risks and benefits of different treatments.

Overall, MS registries play an important role in advancing our understanding of the disease, improving treatment options, and ultimately, improving the lives of people living with MS. Registries can fill the gap in our knowledge of MS that can be used to improve access to medications, reduce costs in the health care system and negotiate improved policies with regulators. Ultimately, having MS registries is needed to understand how can the lives of people with MS be improved.

EMSP has been working closely with MS Societies through various programs to facilitate the roadmap toward establishing registries on a national level. Through its Membership Capacity Building Programme, EMSP has been closely working with MS societies in the Balkans region to support them in setting up their MS registries, sharing best practices from other societies, and providing them with tailored advice.

Through its work within the MS Data Alliance, EMSP also organized a series of 5 webinars between January and April 2023 on how to set up a registry, the value, the minimal datasets, and how this can be done, alongside discussions on trust, data protection and the way forward. With the MSDA team, a call for Fellowship Program was launched to select one candidate from the Balkans and Central and Eastern Europe countries who will be mentored to set up the MS registry in their country.

Glimpse on efforts in Greece by two MS Societies: The Hellenic Federation of Persons with Multiple Sclerosis and the Greek MS Society

Aliki Vrienniou, the International and Public Relations Counselor from The Hellenic Federation of Persons with MS (HFoPwMS), and Prof. Anastasios Orologas, the Chairman of the Board at the Greek MS Society (GMSS) share below the experiences and efforts of the two MS organisations to set up an MS registry in Greece.

Both organisations consider that keeping an electronic registry of patients with MS is of the highest importance. Consequently, early on GMSS created an electronic registry of its members, hence creating as soon as the 1990s the first electronic database of patients on a panhellenic scale. It became obvious that people with MS are far more than the scientific community originally accounted for. Both Societies considered that it was the role of the Greek State to create and keep such a registry.

For this reason, GMSS promoted the voting of a law by the Ministry of Health in 2005. In that specific law 3402/05, and more specifically in the 24^th article, 4^th paragraph it is mentioned that: “People suffering from MS are registered in a specific Record of the Ministry of Health and Welfare. With a decision taken by the Minister of Health and Welfare, the process of registration is established, and the participation of proper social units is allowed in setting up and managing the registry.”

In parallel, the HFoPwMS has established alliances to push forward with setting up a national MS registry in Greece. Over the past 2.5 years, the Hellenic MS Federation has been following all stages of the formulation of the initiative undertaken by the Hellenic Academy of Neuroimmunology (HELANI), leading to a project proposal development in collaboration with the Aristotle University of Thessaloniki (AUTH), coordinated by Professor of Neurology Dr. Nikolaos Grigoriadis for the creation of a National Network for MS. In this direction, a proposal for a Technical Project Bulletin has been formulated through ODIPY, the Greek Quality Assurance Organization under the Ministry of Health, and the scientific body at AUTH.

The results that will be produced by this project’s implementation mainly have as recipients, people with MS, whose number according to a recent pharmaco-epidemiological study prepared by AUTH (with the constant aid by Mrs. Aliki Vrienniou, on behalf of HFoPwMS, in thorough discussions over the MS prevalence parameters of the study) reaches 22,000 people in Greece, as well as their immediate environment (family, caregivers, etc.) which are also greatly affected by this condition. The Hellenic Federation, after close cooperation with IDIKA (Electronic Governance of  Social Security) and EOPYY (Greek National Health Service Organisation) has also submitted valuable data to the EMSP’s MS Barometer 2020 to update the information on MS prevalence in Greece and the health services for those who suffer from MS.

Recently, the Greek Quality Assurance Organization officially submitted to the Greek Ministry of Health an action plan for the creation of a Network of Health Services for the more efficient management and care of patients with MS. The basis of this Network is the creation and use of a National MS Registry.

The Hellenic Federation of People with MS has, therefore, directed an official letter to the Minister of Health on the 28^th of February supporting the Proposal of the National Network of MS and requesting a meeting to discuss the proposition for the creation of the MS National Registry.

Only positive outcomes can come out of the implementation of the Project, both for people with MS and for the society in general, including improvement on health, welfare, social and psychological issues, support for work and employment, to name a few. The GMSS has also put pressure on the leadership of the Ministry of Health on various levels and occasions, either in the form of a memorandum or through immediate meetings, in order to convince the Ministry of the importance and utility of a complete patients’ registry, aligned with international standards and the good practices of other countries, like Denmark and Sweden.

Unfortunately, even though many years have passed by since the start of the MS Societies’ efforts and since this specific law was voted, the Greek State has not proceeded with the creation of this registry. Meanwhile, many steps have been taken forward, like the electronic prescription and the screening of the examination results and the medication by specific platforms. However, these platforms cannot yet be considered patient registries, especially for MS. The creation of these registries should be seen under the light of the economic crisis regime and the need for patients’ health costs to be checked and retained low.

Based on the data that has been obtained through the years the Greek MS Society (GMSS) has informed not only EMSP’s MS Barometer, but also MSIF’s MS Atlas, the quality-of-life index and other platforms on an international level. Moreover, the Society has contributed to two published studies (Flacheneker et al. and Glaser et al.) based on the data it has obtained, in order to promote the study and the survey of MS in Greece.

As reported by the Hellenic Federation, Dr. Grigoriadis Professor of Neurology at AUTH, Secretary of HELANI and Scientific Manager of the action plan, noted that the plan is set up with the aim of including all public Clinics and Laboratories (University and National Health System) and possibly private ones, as well as health units (clinical laboratories) afterward.

The project’s ambition, as he mentioned, is the creation of a new central structure that will connect the patients with health professionals of the needed specialties, the primary health structures, caregivers, Patient Associations, medical companies, research institutes, Universities, EOPYY (National Organization For Health Care Services), IDIKA (e-Government Center for Social Security Services), the pharmaceutical companies, the relevant ministries, Social Security and Welfare, with the ultimate goal of optimizing the provision of personalized care services and the collection of research data, the processing of which will allow a better diagnosis and treatment of the disease and the development of new protocols. Prof. Grigoriadis announced in December 2022 at the Pan-Hellenic HELANI Conference that, at the first stage of the Network Project, 14 of the 30 neurologic clinics – but other small ones as well – in Greece will participate, which is a great data source towards creating a national MS Registry.

It is important to note that in May 2023, National Elections will take place in Greece, which may alter the composition of the new leadership of the Greek Ministry of Health. This would mean that both MS Societies will have to organize a new round of meetings and start a new cooperation with the Health Ministry on the issues related to MS – keeping this journey of efforts continued until the goal of establishing an MS registry in Greece is reached.