Fondation FondaMental

What is Fondation FondaMental and what is its mission?

Fondation FondaMental is a scientific cooperation foundation dedicated to mental health. It was established in 2007 at the initiative of the French Ministry of Higher Education and Research, alongside other research institutes such as the Institut du Cerveau and Institut Imagine, following a call for proposals for the creation of a Thematic Network for Research and Care (RTRS), to which Professor Marion Leboyer responded.

Fondation FondaMental has the same legal capacity as a public-interest foundation and operates in the public interest as defined by law. It leads major thematic research programmes in psychiatry, drawing on both public and private resources. Scientific cooperation foundations are private, non-profit legal entities governed by the rules applicable to public-interest foundations.

As a private, non-profit organisation, Fondation FondaMental is authorised by law to receive both public and private funding (donations, bequests, and sponsorship) to support research and innovation in psychiatry for the benefit of patients and their families.

The Foundation is overseen by a Government Commissioner, who ensures that its activities serve the public interest.

Our missions

Fondation FondaMental is committed to four key missions:

• Supporting innovation in the organisation of care
• Accelerating research in psychiatry
• Disseminating knowledge
• Fighting stigma associated with mental health disorders

Supporting innovation in care organisation

Since 2010, Fondation FondaMental has created and coordinates a national network of Expert Centres, which serve as platforms for diagnosis and research.

Among its key achievements, the Foundation has coordinated a care pathway project for bipolar disorders (Passport BP, Article 51 initiative) and developed psychoeducation, information, and training tools for patients and their families (Bref, LENA, BAE, MyMood, etc.).

Accelerating research in psychiatry

By responding to national calls for proposals (such as the Investments for the Future Programme and the French National Research Agency), and through philanthropic support, the Foundation funds projects aimed at improving diagnostic precision, advancing understanding of the causes of mental disorders, and developing innovative therapeutic approaches.

Fondation FondaMental is also involved in numerous European projects (Horizon 2020, ERA-NET NEURON) and has contributed to the creation of international consortia, notably with Germany (centres of excellence) and the United Kingdom (French-UK consortium for the discovery of biomarkers of mental disorders).

Information

Fondation FondaMental organises an annual conference series aimed at improving training and raising awareness on major issues related to mental health disorders. It also regularly organises or participates in national and international conferences.

Fighting stigma associated with mental health disorders

Fondation FondaMental is committed to combating the stigma surrounding psychiatric disorders and the people affected by them. It works to disseminate research findings and advocates for strong public policies in mental health.

To achieve these objectives, the Foundation:

• Organises events to inform the general public and combat stigma associated with mental health disorders
• Responds to requests and invitations from journalists and decision-makers to share data and scientific research findings, contributing to informed public debate
• Promotes knowledge transfer among researchers, healthcare professionals, and associations through conferences, scientific congresses, and dedicated events for patients

Expert Centres

What are FondaMental Expert Centres?

Designed and developed by Fondation FondaMental since 2010, the Expert Centres are specialised platforms for diagnosis and research. They provide in-depth diagnostic assessments for patients with depression, schizophrenia, bipolar disorders, or autism spectrum disorders.

Inspired by the model of Expert Centres for neurodegenerative diseases (such as Parkinson’s or Alzheimer’s disease) and rare diseases, they receive patients referred by their doctor (psychiatrist or general practitioner) and offer a standardised, systematic, and comprehensive assessment (psychiatric, physical, cognitive, and biological).

These assessments are carried out by multidisciplinary teams integrated within public healthcare institutions, generally within sector-based or university hospital psychiatry departments.

A personalised diagnostic and care approach

These assessments make it possible to establish a precise diagnosis and to provide personalised treatment recommendations, as is already the case in other medical fields, particularly oncology.

Following the assessment, a feedback consultation is offered to patients and their relatives, and a detailed report is sent to the referring physician, including the results of the evaluation and tailored therapeutic recommendations.

Expert Centres represent an important step in the care pathway and operate in close coordination with healthcare professionals responsible for patient follow-up (community mental health centre psychiatrists, private psychiatrists, and general practitioners).

What is the value of diagnosis-specific Expert Centres? What benefits do they offer to patients?

Gradually deployed since 2010, these Centres have been designed to assess their impact on disease prognosis and have demonstrated their effectiveness. According to an initial study published in 2017, it was shown that 12 months after a first assessment in a Bipolar Expert Centre, patient outcomes improved significantly. This was reflected in a 50% reduction in re-hospitalisations, improved treatment adherence, a decrease in symptom severity, and better detection of non-psychiatric medical comorbidities.

Since then, numerous studies have examined the impact of diagnostic assessments carried out in Expert Centres across various conditions. These studies have led to several publications in international peer-reviewed journals, confirming the methodological rigour and robustness of the findings.

How can this success be explained?

The strength of these networks lies in their ability to enable teams to work together across the entire country. Expert Centres are organised into national networks by pathology, facilitating collaboration between teams and contributing to anonymised databases. These databases allow clinicians and researchers to analyse observational and longitudinal data, improving understanding of mental disorders, identifying patient subgroups, and offering more tailored treatments.

In this way, Expert Centres create a virtuous cycle that supports progress towards precision psychiatry and personalised care.

What is precision psychiatry?

Today, psychiatric diagnoses are primarily based on observable clinical symptoms, such as sadness, anxiety, fatigue, or the presence of hallucinations. These symptoms can be measured in a standardised way using internationally validated tools, which have helped harmonise diagnoses across teams and countries.

Precision psychiatry research aims to go further by enriching diagnostic classifications with objective, measurable, and quantifiable biomarkers, using tools such as brain imaging, biology, electrophysiology, and digital technologies. These biological signals will help identify prognostic and stratification biomarkers and group patients with similar characteristics (such as the presence of autoantibodies targeting brain receptors, metabolic abnormalities, or altered brain connectivity). This will enable a better understanding of disease mechanisms, more accurate diagnoses, and the development of more targeted therapeutic strategies.

What are the expected benefits?

Based on these advances, it will become possible to:

• Personalise treatment strategies (medication, psychotherapy, lifestyle interventions, etc.) according to each patient’s biological profile and symptoms
• Measure the effectiveness of therapeutic innovations using objective evaluation criteria in clinical trials
• Accelerate the development of new treatments designed to target specific biological mechanisms within homogeneous patient subgroups

The goal of precision psychiatry is simple: to provide each patient with the right treatment at the right time, thereby reducing the trial-and-error approach that still exists in treatment selection. As seen in oncology over the past two decades, these advances could transform care and significantly improve patients’ quality of life.

This approach does not replace the human relationship at the heart of care. On the contrary, it provides additional tools to support medical decision-making.

Do Expert Centres provide easier access to therapeutic innovation?

When appropriate, Expert Centres can refer patients to facilities offering innovative therapies. Their teams may also invite patients to participate in studies conducted by Fondation FondaMental, when relevant and with the patient’s consent.

This is the case, for example, with the TiM-DePist project, which aims to identify patients carrying autoantibodies targeting certain neurotransmitter receptors, in order to offer them participation in a clinical trial combining immunotherapy with their usual treatment.

Research

What concrete results demonstrate the dynamism of research carried out through the Expert Centres?

Research teams and Expert Centres at Fondation FondaMental have contributed to several major discoveries:

• Advances in genomics have improved the identification of genetic factors that contribute to the development of bipolar disorders, autism, and schizophrenia. This has enabled a better understanding of the underlying mechanisms of these conditions, including mutations in genes involved in synaptic development in autism spectrum disorders, associations with functional variants of innate and adaptive immunity, complement system haplotypes involved in synaptic pruning, and circadian rhythm genes.
• Brain imaging techniques have made it possible to better identify the brain regions involved in psychiatric disorders. This, in turn, allows for more targeted therapies, as already seen with rTMS (repetitive transcranial magnetic stimulation). By precisely targeting specific brain areas, this technique can effectively treat conditions such as treatment-resistant depression.
• The identification of links between immune dysfunction and mental disorders has shown that around 40% of psychiatric conditions are associated with chronic inflammation. Identifying patients affected by this inflammation makes it possible to test the effectiveness of anti-inflammatory therapeutic strategies.
• Epidemiological studies have shown that metabolic syndrome (obesity, hypertension, dyslipidaemia and/or hyperglycaemia) affects more than 20% of individuals living with bipolar disorder, compared with around 10% in the general population in France. This syndrome significantly increases the risk of cardiovascular diseases, which are among the leading causes of mortality in patients with bipolar disorder. It is therefore essential to implement systematic screening and provide comprehensive care for these patients.

A clear indicator of the dynamism of psychiatric research within the Expert Centres is the production of more than 200 international scientific publications over the past 10 years. These outputs stem from the work of these networks, which represent some of the largest cohorts worldwide.

Does Fondation FondaMental focus solely on biology?

No. Fondation FondaMental adopts a comprehensive and integrative approach, examining the multiple factors involved in mental disorders: biological, environmental, psychological, and social. It has contributed to the development of numerous psychosocial therapy programmes, such as psychoeducation initiatives since the 2010s, as well as support programmes for caregivers (Bref, Leo, etc.). The Foundation fully recognises the importance of factors such as social vulnerability, socio-economic status, trauma, and pollution as sources of increased risk.

As in all areas of medicine, prevention and innovation go hand in hand. It is essential to address risk factors while simultaneously developing more precise diagnostic tools and new therapeutic solutions. Together, these approaches contribute to more effective care.

What are the references for scientific publications evaluating the impact of diagnostic assessments carried out in Expert Centres coordinated by Fondation FondaMental?

Continuous evaluation and improvement of the effectiveness of care provided within the Expert Centres are central to our mission, carried out jointly by the Expert Centre teams and Fondation FondaMental.

Numerous studies have assessed the impact of diagnostic assessments conducted in these Centres. These works have led to several publications in international peer-reviewed journals, demonstrating both the methodological rigour and the robustness of the findings.

The synthesis of all results published from data collected in the Bipolar Expert Centres was published in the Journal of Affective Disorders in 2022:

• LEBOYER M, et al. Key findings on bipolar disorders from the longitudinal FondaMental Advanced Center of Expertise – Bipolar Disorder (FACE-BD) cohort. Journal of Affective Disorders, March 2022, 307, 140–156. PMID: 35339569.

Explore more scientific publications here: Scientific Publications | Research & Projects

Patient involvement in research

What role do patients and their families play in research?

As the individuals most directly concerned, patients and their families play an active role in psychiatric research: participation in cohorts, patient advisory boards, and co-design of research projects. Their involvement helps ensure that scientific work addresses real-world needs and contributes to research that is more closely aligned with lived experience.

Are patients aware that assessments carried out in Expert Centres are also used for research, and how are they informed?

Each patient seen in an Expert Centre remains fully in control of their data: they may choose whether or not to authorise its use and, in accordance with applicable legislation, have the right to access, correct, or delete their data at any time, without any impact on their care.

Patients are informed about how their data may be used and provide consent through a non-objection form. They are also informed of their right to modify or withdraw their consent at any time. When biological data are collected, specific informed consent is obtained in accordance with the legal and ethical requirements governing biomedical research.

Data collected within Expert Centres are anonymised, securely stored, and used solely for scientific research purposes, in strict compliance with ethical standards and following approval by the CNIL and the Comité de Protection des Personnes (CPP). Data are hosted in France by certified Health Data Hosting (HDS) providers and SecNumCloud 3.2-qualified operators accredited by ANSSI.

The Foundation’s open science approach is limited to public scientific research, contributing to the collective advancement of knowledge and care.

In addition, data protection measures are overseen by a Data Protection Officer (DPO), who ensures compliance, documents data use, and helps prevent misuse. The legal framework governing health data processing in France and Europe is strict and prevents any misuse or commercial exploitation of health data.

Specific case: biological data collected in research projects

With regard to biological data collected as part of research involving human participants, patients are required to complete and sign an informed consent form, in accordance with public health regulations.

Biological collections within the Expert Centres have been declared to the Ministry of Research, the ANSM, and the CNIL, and have received favourable opinions from the Ethics Committees (CPP) of Pitié-Salpêtrière and Saint-Antoine hospitals.

Participation in these research projects is voluntary and does not involve any financial compensation. In accordance with the French Data Protection Act and GDPR regulations, patients have the right to refuse participation or to withdraw, restrict, or modify their consent at any time, without having to provide justification and without any impact on their medical care.

Our supporters

How do you view the role of your donors in your activities?

Fondation FondaMental is a private, non-profit foundation, which allows it, in accordance with the law, to receive both public and private funding (donations, bequests, and sponsorship) to support research and innovation in psychiatry, for the exclusive benefit of patients and their families.

This status was introduced in 2007 at the initiative of public authorities to enable the creation—by simple decree rather than by decree of the Conseil d’État—of foundations dedicated to major thematic research programmes. It allows funding from private sources, including donations, bequests, and philanthropic contributions. Fondation FondaMental was therefore established to support research and innovation in psychiatry. Scientific cooperation foundations are private, non-profit legal entities governed by the rules applicable to public-interest foundations.

This combination of public and private support, from both major and individual donors, helps advance research and innovation in psychiatry for the benefit of patients.

How do you ensure the independence of your research?

Support from private donors (both corporate and individual) is strictly regulated and fully transparent. It does not compromise the scientific integrity or independence of the Foundation, which remains dedicated to its public-interest mission in research and innovation in psychiatry.

Strategic and scientific decisions are made independently, with the support of expert scientific committees composed of internationally recognised researchers and professionals.

Fondation FondaMental brings together a network of hospital departments and research teams that have been working collaboratively for nearly 20 years. It includes more than 500 affiliated researchers, many of whom are internationally recognised. All research outputs are subject to national and international peer review, without any external influence, in accordance with ethical and professional standards—and their benefits are directly translated into improved patient care through the Expert Centres.