The BEL-FMD project
FMD-Be, the Belgian FMD patient association, supports the BEL-FMD project.
This Project initiated by Prof. Alexandre Persu (Cliniques Universitaires Saint-Luc, Université Catholique de Louvain) and Prof. Patricia Van der Niepen (UZ-Brussel, Vrije Universiteit Brussel) in collaboration with experts from seven Belgian universities includes a multicentric cohort study as well as a genetic project.
The multicentric cohort study aims to collect anonymously patient details about their disease, symptoms, treatment and outcomes .
This will enable a better understanding of the frequency of the disease in specific arteries, contribute to better diagnostic procedures, improved treatment and follow-up processes, and also allow an earlier intervention for those patients at risk of deterioration of their condition or of further complications.
This study also will promote a stronger network of cooperation between the expert centres, and in turn allow for a harmonization in patient care at the national level.
The genetic study aims to identify the genes that predispose the disease, primarily by analysing genetic markers distributed over the whole genome and comparing those of FMD patients with a “healthy” control group. This is being carried out at both a European and an International level. The identification of the predisposing genes will allow a better understanding of the causes, identify new diagnostic markers and hopefully lead to identification of medications or interventions that may slow the diseases evolution.
The initiators of BEL-FMD aim to increase the awareness of FMD within the medical community, with patients and amongst the general public.
It is within this initiative that two national (with the presence of International experts) and one International symposium (coordinated by Prof. A. Persu, Brussels and Prof. H. Gornik, Cleveland, USA) have already been held, most recently in December 2016 and in February 2018.
Meeting programs available here:
Finally they provide the expertise to validate the text and documents used on this FMD patient website and to help with any other possible future initiatives.
The European/International FMD registry and initiative (FEIRI)
The BEL-FMD project is nestled within the larger European/International FMD Registry and Initiative, coordinated by Prof Alexandre Persu (Clinique Universitaires, Université Catholique de Louvain) with the support of the European Society of Hypertension (ESH) and The European Society of Vascular Medicine (ESVM).
The European/International FMD Registry and Initiative also provides the scientific committee responsible for updating and translating of the medical information available on this website, in collaboration with the European patient network Euro-FMD.
If you would like to read more information on the European/International FMD Registry and see details of the participating centres, consult this article from “Hypertension” 2016 ! An updated list of participating centres will be posted soon on this website.
If you would like to read or download the call for participation in this European FMD research initiative, click here .
HOW TO JOIN A CLINICAL STUDY
Patients wishing to participate in the BEL-FMD study are invited with the agreement of their doctor to contact one of the participating centres or to send a message via mail to FMDfirstname.lastname@example.org (The webmaster will forward the mail to the specialist best placed in terms of dominant medical issue, geographic location and language spoken)
Please find below the list of participating centres in the BEL-FMD study with the name of the leading doctor .
- Cliniques Universitaires St-Luc (UCL) – Prof Alexandre Persu ( Cardiology Department )
- UZ-Brussel (VUB)– Prof Patricia Van der Niepen (Nephrology Department )
- Erasmus Hospital (ULB)– Prof Jean-Claude Wautrecht ( Cardiology Department )
- UZ- Gasthuisberg (KUL)– Prof Peter Verhamme ( Cardiology Department)
- UZ-Gent (UG)– Prof Tine De Backer ( Cardiology Department)
- UZ-Antwerpen (UA)– Dr Hilde Heuten ( Cardiology Department)
- AZ-Sint Augustinus (GZA)- Dr Wouter Vinck ( Endocrinology Department)
- CHU Sart-Tilman (ULg)– Prof Jean-Marie Krzesinski ( Nephrology Department)
- This list is not the exhaustive list of all participating centres
- Whatever the speciality or service, all the specialists mentioned in this list work within a multidisciplinary team, in collaboration with cardiologists, nephrologists, neurologists, paediatricians, surgeons and vascular radiologists.