Dr. Sophie Durand
Dr. Anne Hiance-Delahaye
Created in 1997, the Jerome Lejeune Institute is one of the world’s leading medical centers specializing in Down’s syndrome and intellectual disabilities of genetic origin. In partnership with the Paris-Saint Joseph hospital group, the Institut Jérôme Lejeune pursues three major missions: care, through its consultation service; research, through its research department; and training of families and professionals. With a multidisciplinary team of about 40 professionals, including doctors and specialized paramedical professionals, the Institute offers a truly global, personalized, lifelong medical follow-up to nearly 10,000 patients with trisomy 21, further syndromes or genetic anomalies as well as for patients with an intellectual disability of unknown origin.
Research is an integral part of the Institut Jérôme Lejeune, is patient-oriented, provides a better understanding of the causes of intellectual deficiency and allows us to seek treatments to improve the autonomy and quality of life of patients. In addition, the Institute also manages a unique biological resource center (BioJeL), that together more than 6,500 biological resources to promote exchanges between scientists in France and internationally to advance research on genetic diseases with intellectual disabilities.
As a member of GO-DS21, IJL will be involved as clinical site to recruit patients for the prospective DS cohort who will undergo detailed assessment for comorbidities, as well as in-depth collection of data on diet, lifestyle, activity levels, exposure to stressful events, biomarkers of stress-response etc. to explore how diet, stress and exercise influence obesity/ cognitive comorbidity. As part of WP7, IJL will in addition be involved in the dissemination of the information to families, patients and caregivers.