IMPORTANT NOTICE :

Dear BELTRIMS user,

Unfortunately and due to some changes within the company hosting BELTRIMS it is currently not possible to enter data in the BELTRIMS Registry or to access or make changes to the existing data. We anticipate this problem will be solved by the beginning of April 2025. We apologize for the inconvenience.

Bénédicte Dubois
President BSGMS

The BELTRIMS registry

In 2012, a working group from the Belgian Study Group for Multiple Sclerosis started a Belgian registry of Multiple Sclerosis (MS) patients starting a new treatment. Until then, no such registry existed and follow-up of side-effects from newly available MS treatments was done by pharmaceutical companies, thus making longterm follow-up of patients almost impossible.

The working group took advantage of the fact that prescription of Gilenya® (fingolimod) had been limited to so-called « MS experts », almost all members of the BSGMS, to create a registry of Belgian patients treated with fingolimod. This was called the BELFIMS (BELgian FIngolimod in MS) registry, a first step in establishing a national registry of Belgian MS patients. The ultimate goal of this registry was to detect unknown or rare side-effects, to capture pregnancy outcomes (although pregnancy is contra-indicated while taking this drug), and to collect real-life efficacy data.  As Aubagio® (teriflunomide) became available in the context of a medical need program in 2013  and Tecfidera® (dimethylfumarate) was added to the therapeutic arsenal in 2014, it was decided to enlarge the registry to include patients starting any new MS drug. Thus, BELFIMS became BELTRIMS (BELgian TReatment In MS).

In January 2014, the BELTRIMS registry was approved by the Central Ethics Committee of the Antwerp University Hospital.

As stated earlier, the great advantage of this registry is that data are collected independently and in one single registry. It thus became possible to follow the longterm effects of treatment on disease evolution independently of eventual change from one immunosuppressive or immunomodulatory drug to another, as well as to collect data on shortterm and longterm side-effects, with special attention to infections and malignancies. Follow-up data is captured every 6 months and serious side-effects are recorded as well. It is important to note that we only register data that are available from routine clinical practice (e.g. number of relapses, MRI number of T2 or enhancing lesions, lab results, EDSS); no extra investigations are required for this registry. Any new disease modifying drug that appears on the market is entered into the registry.

As a next step, he BSGMS is currently working on a new version of BELTRIMS. This is done in a collaboration between BSGMS as the legal entity, INAMI-RIZIV as the sponsor, and Healthdata.be as the technical partner. Ultimately we want to develop a link between this new version of BELTRIMS, and existing databases, such as iMED or EDMUS. Updates on this project will be provided in due time.

For now, all neurologists who are members of the BSGMS are invited and encouraged to participate in the current BELTRIMS registry. We hope as many patients as possible will be included, as this could fill an important gap in our knowledge of MS treatment.

If you are interested, please send your request to: info@bsgms.org.

Prof. Bénédicte Dubois
President Belgian Study Group for Multiple Sclerosis