The ELA biobank, a research pivot



Written on Monday 6 May 2013

On June 26th 2012, the Lorraine technical committee for the programming of the Regional Development of European Funding (FEDER) selected the ELA project concerning the constitution of a bank of biological samples, or biobank, in Nancy (54). This biobank will ensure the conservation of human biological material (blood, cell." >DNA, tissues etc.) associated with a clinical database that consists of the medical records of patients suffering from leukodystrophy. Eighteen months of effort to convince our different partners of the relevance of such an approach was finally rewarded.

The different phases

Initially, renovation of the layout of the premises made available to us by Nancy Centre Hospital-University (CHU), a partner in the project, will be necessary to house the biological collections.

The biological collections will then be constituted according to 2 different modes:

  1. The transfer of existing samples: nearly 20,000 samples are currently stored in different sites in France (primarily in Clermont-Ferrand) ;
  2. The organization of the transport of new samples from French Hospital Centres (including in Europe) to Nancy where they will be treated and stored.

Our aim is to mobilize 400 donors by 2015, to incorporate almost 10,000 new samples. A biobank of this size for leukodystrophies would be unique in Europe.

The project presages the development of an information system providing us with knowledge of, and linking the medical records to, the biological samples conserved in the leukodystrophy biobank. It is this interface between medical records and sample conservation that constitutes the main and innovative aspect of our project.

The perspectives

Identification of homogeneous groups of patients and characterisation of leukodystrophies

The biobank, in conjunction with the medical records, will allow homogeneous groups of patients (also known as cohorts) to be assembled that display the same types of symptoms.
Thus, to discover new genes that are responsible for undetermined leukodystrophies, the constitution of cohorts with the aim of studying their global DNA sequences (by high speed sequencing) will be greatly facilitated.
Effectively, transmitted from generation to generation, DNA contains the information necessary for living organisms to develop and survive. Sequence determination (or sequencing) allows the identification and diagnosis of genetic diseases and the potential development of innovative therapies. During high speed DNA sequencing, enormous quantities of computing data are collected (5,000 Giga of data for a complete DNA). To identify the genes responsible for an undetermined form of leukodystrophy from within this mass of data, tools allowing research systematisation are needed. The aim of our project is to develop and optimize such computing tools for leukodystrophies.
On a wider scale, the ability to select relevant cohorts will help to boost scientific research activities into leukodystrophies and will accelerate the evaluation of the potential that innovative therapies could represent.
The study of biological material and associated medical data on a high scale will also engender a better understanding of the disease and a refining of its natural history, contributing in the future to an improved medical care and a more rapid diagnosis.

Identification of biomarkers

A biomarker is a molecule that we can measure in biological liquids and for which a concentration change is indicative of pathology. Biological markers are useful in the diagnosis of a type of leukodystrophy or in the prognosis of its evolution. This last point is very important, since for many leukodystrophies the identification of the gene anomaly responsible does not allow us to predict disease evolution and thus a therapeutic strategy.

By collecting the largest possible number of samples of biological liquids (sera, plasma, cells, cerebrospinal fluid) and/or cells (fibroblasts, lymphocytes), our project will contribute to the identification of new biomarkers for the diagnosis or prognosis of diverse types of leukodystrophies.

The creation of the medical database closely linked to the conservation of biological samples will allow ELA, alongside medical and scientific research teams, to play a pivotal role in French and European research into leukodystrophies.
The biobank aims to become a true European reference site, thanks to the creation of new collections as well as the transfer to it of samples from existing French and European biobanks.
Its inauguration is planned for January 2014, at the same time as our Scientific Congress, which gathers together nearly 250 scientists from the whole world, will be held.

The budget

Time schedule: 1st April 2012 – 31st December 2015
Global cost of the operation: 2,279,687 euros
Financial partners:

  • FEDER : 760,000 euros
  • French Ministry of Higher Education and Research (Ministère de l’Enseignement supérieur et de la Recherche): 15,000 euros
  • Lorraine Regional Council (Conseil Régional de Lorraine): 400,000 euros
  • Greater Nancy Urban Community (Communauté Urbaine du Grand Nancy): 325,000 euros
  • INSERM: 20,000 euros
  • ELA : 759,687 euros