« Without the Institut Imagine’s help, we would never have conducted this study that led to the largest cohort of teenagers in France affected with the Pierre Robin syndrome. This rare genetic disease is characterized by oro-facial malformations and neonatal disorders of suction-swallowing and breathing. »
Prof. Véronique Abadie, Head of the General Pediatrics Department of the Necker-Enfants malades Hospital, Coordinator of the Reference Center for Rare Diseases for “Pierre Robin’s Syndromes and Congenital Suction-Swallowing Disorders” (SPRATON).
Clinical research is a necessary step in transforming research findings into solutions that benefit patients: it enables the development and validation of innovative therapies – gene or cell therapy, new drugs, and medical devices. The Institut Imagine has therefore committed itself to establishing ways of accelerating clinical research by organizing it in close relationship to the patient :
- Strengthen clinical research staff, consisting particulary of clinical research coordinators and nurses to support doctors and patients in conducting clinical studies;
- Create a fund dedicated to initiating the most promising clinical studies for patients (and until now insufficiently funded once started);
- Develop new modeling approaches and algorithms based particulary on Big Data to facilitate the launch of clinical trials and the recruitment of patients;
- Collaborate with European networks dedicated to rare diseases to accelerate the development of new systems.
Context & Objectives
The Institut Imagine has set the following objectives:
- to double the number of clinical studies resulting from research on genetic diseases over the next 5 years;
- to continue enriching the cohorts of exceptional patients on which the Institute teams uniquely base their research work.
It is therefore necessary to promote and facilitate clinical studies in the Institut Imagine’s field of innovation. To do so, the Clinical Research Department accompanies clinicians throughout the project from its design to its publication, in compliance with ethics and quality regulations. It also accompanies patients and their families in both their consent and study participation in the scope of the research. More than 500 clinical studies are currently being conducted by the Institut Imagine teams. More than 7,500 patients have already been enrolled. And nearly 80 therapeutic solutions directly derived from the Institut Imagine’s fundamental research are being developed.
/ To strengthen the clinical research team by recruiting 4 coordinators and clinical research technicians mobilized alongside doctors
/ To create the initial fund to finance or co-fund the most promising clinical research projects for patients