Our model
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Process
101 Genomes has developed a consent collection and management application that enables anyone with a rare disease to consent to the collection and sequencing of their DNA.
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01 | Consent and dispatch of sampling kit
To take part, simply visit www.101gems.be, register and give your online consent to join GEMS.
Once your consent has been countersigned by the GEMS researcher, you will receive a box containing a saliva collection kit at home.
You can then take a saliva sample by following the instructions on the box, and return the kit to the laboratory free of charge.
02 | Laboratory
In the laboratory, GEMS researchers isolate the participant’s DNA and sequence it so that the data can be used in the search for protective genes.
03 | Biobank
Biological samples from participants are kept in the 101 Genomes biobank to anticipate technological developments and to allow for possible checks and verifications.
04 | Genomics Cloud
The sequenced genomes – i.e. digitized or translated into computer language – of GEMS participants are hosted in a highly secure environment in the 101 Genomes Genomic Cloud, enabling bioinformaticians to deploy their algorithms to discover the protective gene(s) capable of making a real difference to the therapeutic management of Marfan syndrome.
These data enable researchers – who have been granted access to them – to try to identify protective genes.
Model development
101 Genomes is a project initiated and fueled by patients.
It began with the commitment of a young patient’s parents to advance research into rare diseases. This commitment led to the creation of 101 Genomes, which collects patients’ biological and genomic data to support research.
Biological data is kept in the 101 Genomes biobank, while genomic data is stored in its Genomic Cloud.
To collect this information, 101 Genomes must obtain informed consent from patients, leading to the creation of the GEMS application, dedicated to consent management.
101 Genomes collaborates with patient associations to encourage participation and provide researchers with sufficient data for their work.
The cycle begins and ends with the patient, making 101 Genomes a truly patient-initiated and patient-centered project.
Reproducibility of the method
101 Genomes has always designed its Marfan research support model so that it can be replicated in the context of other rare diseases.
In late 2025, 101 Genomes secured the necessary funding to launch the 101 Genomes Loeys-Dietz project! Under the leadership of Professor Bart Loeys of the University of Antwerp, 101 Genomes began collecting genomes from Loeys-Dietz patients with the goal of launching the GELDS study—the search for protective genes in Loeys-Dietz syndrome—as early as January 2026.
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Are you a group of researchers or a patient association for rare genetic diseases?
Each of the pillars above can be made available to your research project.