Genomics and algorithmic
The 101 Genomes Foundation (F101G) aims to advance research by 10 years through the creation of an innovative database that will allow researchers to tame the genome in order to better understand and treat rare diseases
The disruptive innovation of the genomics and bioinformatics revolution makes this objective possible today.
According to Professor Anne de Paepe, Prorector of the University of Ghent, it is " a unique and unprecedented example of patient participation in scientific research ".
Quest for protective genes
In practice, F101G will create a bioinformatics tool containing complete genomic (Whole Genome Sequencing) and cross-phenotypic data from patients with rare diseases.
- This tool will be freely accessible to the scientific community through a secure interface to help them better understand the causes of rare diseases and the variability of the disorders they cause.
- The tool aims to identify possible modifier genes that protect against major damages caused by rare diseases.
- Such a discovery could lead to the development of new treatments that replicate these protective effects.
The 101 Genomes Marfan Project (P101GM) is the pilot project of the F101G. This Project is dedicated to Marfan syndrome. It is built on an extensible starting cohort of 101 patients.
The Scientific Committee of P101GM is composed of leading scientists who are world leaders in the fields of Marfan syndrome, genomics and algorithms. This committee includes professors Julie De Backer, Bart Loeys, Guillaume Smits, Guillaume Jondeau, Catherine Boileau and Anne De Paepe.
P101GM is supported by the European network VASCERN and by several European Marfan patient associations. It received the 2018 Edelweiss Prize awarded by the Belgian Alliance for Rare Diseases: RaDiOrg.
The Fund that finances F101G's activities is hosted by the King Baudouin Foundation.
Training jurists, Ludivine and Romain Alderweireldt-Verboogen created the Fondation 101 Génomes to help children who, like their little boy, are suffering from a rare disease.
Foundation, Fonds & project 101 genomes
Fondation 101 Génomes
The (F101GFondation 101 Génomes) was created in November 2017 by the parents of a young boy with a rare disease.
F101G aims to promote research by providing scientists with a cross-database containing genomic and phenotypic data from patients with rare diseases. It is hoped that this tool, accessible through a secure computer platform, will allow researchers to identify the existence of possible modifier genes that would protect some people from the major diseases usually caused by the rare disease that affects them. The identification of possible modifier genes could make it possible to consider the development of treatments that replicate the effects of these protective modifier genes in patients in whom these genes are not activated in the same way.
The F101G was born from the reading of the transcript of an interview with Professor Hal Dietz
The F101G was born out of an interview with Professor Hal Dietz in which he mentioned that the crossover of genomic and phenotypic data could help to understand "how natural genetic variants can protect some people from the consequences of a fibrillin-1 mutation" and that on this basis scientists might possibly be able to "identify drugs that can mimic nature's successful strategy" [WEISMAN R., "Meet Your Gene: An Introduction to the Marfan gene and Current Research"10 January 2017 available here].
This approach is in line with those of the Genome-wide association studies (GWAS) who have already had some success in the study of certain rare diseases. [RIORDAN J.D., NADEAU J. H.,"From Peas to Disease: Modify Genes, Network resilience and the genetics of Health", " in The American Journal of Human Genetics, 101, 177-191, 3 August 2017, http://dx.doi.org/10.1016/j.ajhg.2017.06.004].
The F101G intends to build on advances in genomics (Whole Genome Sequencing - WGS) to try to offer new therapeutic approaches to patients with rare genetic diseases. Concretely, the F101G intends to engage in fundraising to finance the establishment of a bioinformatics platform that will be able to host projects specific to different rare diseases such as Projet 101 Génomes Marfans described below.
F101G was established on 10 November 2017. It has the company number BE0684609172. Its statutes were published in the annexes of the Belgian Moniteur on 14 November 2017. Its day-to-day management has been entrusted to its Managing Director, Mrs Ludivine Verboogen.
Fonds 101 Génomes
The Fund Management Committee met for the first time on 11 January 2018 in the presence of its President, Professor Anne De Paepe (biography & publications)Mr Gerrit Rauws (Director of the King Baudouin Foundation), Mrs Annemie T'Seyen (Project coordinator at the King Baudouin Foundation) and two representatives of F101G.
The Agreement signed on 17 November 2017 with the King Baudouin Foundation stipulates that donations made in Belgium, France, the Netherlands and Luxembourg for F101G are to be paid into the Banque de la Poste IBAN account: BE10-0000-0000-0404 (BIC: BPOTBEB1) together with the structured communication ***017/1730/00036***.
Projet 101 Génomes Marfans
The project 101 genomes dedicated to Marfan syndrome (P101GM) is the pilot project of the F101G. To learn more about the P101GM follow This link.
Fonds 101 Génomes
The Fund Management Committee met for the first time on 11 January 2018 in the presence of its Chairman, Professor Anne De PaepeMr Gerrit Rauws (Director of the King Baudouin Foundation), Mrs Annemie T'Seyen (Project coordinator at the King Baudouin Foundation) and two representatives of F101G.
The Convention signed on 17 November 2017 with the King Baudouin Foundation provides that donations made in Belgium, France, the Netherlands and Luxembourg for F101G are to be paid into the IBAN Post Bank account: BE10-0000-000000-0404 (BIC: BPOTBEB1) together with the structured communication ***017/1730/00036***.
On the occasion of Rare Disease Day on 28 February 2018, the King Baudouin Foundation published The narrative of the circumstances that led to the creation of the Fonds 101 Génomes. The King Baudouin Foundation also published an article about the Fonds 101 Génomes in number 112 of the journal "Fields of Vision" (available Here in English And Here in Dutch or).
The King Baudouin Foundation invited the F101G to join the workshops dedicated to the reflection on the use of genomic data in health care, the first module of which was organised on 23 February 2018. This reflection is being conducted in parallel with the publication on 19 February 2018 by the Federal Centre of Expertise for Health Care (KCE) of a Report on the challenges posed by complete genome sequencing (WGS) for the Belgian health care system. This report calls for the prudent introduction of WGS in Belgium in the form of a pilot project. Complementarities between the action of the F101G and the pilot project recommended by the KCE could be envisaged.