What We Do
Motor neuron diseases are rare and debilitating neurodegenerative disorders whose causes are not well understood. Santé publique France conducts epidemiological surveillance of these diseases and provides the data needed to better understand their causes.
Epidemiological surveillance of motor neuron diseases
Santé publique France conducts epidemiological monitoring of motor neuron diseases by estimating:
their incidence in France based on data on drug reimbursements, hospitalizations, and care provided under the Long-Term Illness (ALD) program available in the National Health Data System (SNDS)3;
their mortality based on causes of death coded by the Center for Epidemiology on Medical Causes of Death (CépiDc).
This allows us to determine the number of people newly diagnosed with or who have died from these diseases in France each year and to describe them by sex, age, and distribution across France.
We also focus on specific populations. For example, in collaboration with Inserm Unit 10184, we conducted and published a study on the incidence of motor neuron diseases among members of the Mutualité Sociale Agricole (MSA)5. We are continuing this partnership by examining the occurrence of these conditions among active-duty and former career military personnel affiliated with the National Military Social Security Fund (CNMSS)⁶.
Making data available to support research and prevention
The current state of knowledge regarding these diseases does not allow for the implementation of specific prevention measures. Our goal is to make the data generated through epidemiological surveillance available to researchers to facilitate the identification of risk and protective factors for these conditions and potential prevention strategies.
3. National Health Data System (SNDS): A medical-administrative database containing healthcare services covered by the National Health Insurance (doctor visits and medical procedures, medications, hospitalizations, etc.), medical causes of death, and a sample of data from supplemental health insurance providers. The data is linked while ensuring the anonymity of individuals.
4. Inserm (National Institute of Health and Medical Research): A public scientific and technological institution under the joint supervision of the Ministry of Health and the Ministry of Research. It is dedicated to biological, medical, and human health research. It operates across the entire spectrum from the research laboratory to the patient’s bedside.
5. Mutualité Sociale Agricole (MSA): An organization providing social security coverage for the entire agricultural population and their dependents, including after retirement: farmers, employees (of farms, companies, cooperatives, and professional agricultural organizations). National Military Social Security Fund (CNMSS): A national public institution whose primary mission is to provide military personnel and their families with the benefits provided by law, by reimbursing medical expenses incurred due to illness or maternity.
6. National Military Social Security Fund (CNMSS): A national public institution whose primary mission is to provide military personnel and their families with the benefits provided for by law, by reimbursing medical expenses incurred due to illness or maternity.
