Projet 101 Génomes Marfans

The Projet 101 Génomes Marfans (P101GM) is the pilot project for the F101G. P101GM is dedicated to Marfan Syndrome (Orphanet). It is based on a starting (expandable) cohort of 101 patients with Marfan syndrome who would agree to share their genomic and phenotypic data in order to allow researchers to try to identify in them the existence of possible modifier genes that would protect them from cardiovascular (and possibly later musculoskeletal and ocular) damage.

The feedback from the scientists to whom the P101GM was submitted was particularly positive. The Professors Anne De Paepe (UZGent), Julie De Backer (UZGent), Paul Coucke (UZGent), Marjolijn Renard (UZGent), Bart Loeys (UZAntwerp), Aline Verstraeten (UZAntwerp), Guillaume Smits (ERASME), Guillaume Jondeau and Catherine Boileau (Hôpital Bichat, Paris) have agreed to join the P101GM Scientific Committee.

From left to right: Madame Ludivine Verboogen (F101G), Professor Anne De Paepe (UZGent), Dr. Michel Verboogen (F101G), Mr Romain Alderweireldt (F101G), Mr René Havaux (Banque Delen), Madame Cécile Jacquet (F101G), Professor Bart Loeys (UZA), Madam Dr. Aline Verstraeten (UZA), Professor Julie De Backer (UZGent) and Dr. Guillaume Smits (HUDERF) during the philanthropic evening organised by the Delen Bank on 23 November 2017 in Presence of H.R.H. Prince Lorenz of Belgium.

The Scientific Committee of P101GM met for the first time in Brussels on 19 January 2018 with two objectives: (1) to determine the phenotypic data to be collected to ensure that the bioinformatics tool best meets the needs of the research community when it becomes operational; (2) to consider different cohort composition strategies that would maximize the probability of advancing researchers' understanding based on the genomic data of 101 participants. This meeting made significant progress.


The genesis and objectives of the 101 Genomes Project dedicated to Marfan Syndrome are recounted in the following video:


Several patient associations support the 101 Genomes Project dedicated to Marfan syndrome