110719 Leo FLJ Segolene

The context

 • Cancers are as common in persons with intellectual disability as they are in the general population. In France, between 100,000 and 400,000 persons with intellectual disability develop cancer during their lifetime, and between 500,000 and 2,000,000 in the USA. 7,000 new cases are expected every year in France and 35,000 in the USA.

 •  Cancers in persons with intellectual disability differ in their frequency, age of onset, symptoms, and sometimes in their aspect under the microscope and in the difficulties of diagnosis and the treatment they warrant. All these differences require specific management.

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Cancers in persons with intellectual disability are poorly understood by intellectual disability professionals and oncology teams. There is a great amount of data available on cancer in intellectual disability, but widely dispersed. Scientifically, the tumors in persons with intellectual disability raise important questions and offer new approaches to cancer.

 • Persons with intellectual disability need to be helped to strengthen their understanding and adherence. So must be also oncology teams in their approach to these persons.

There is no dedicated structure in France and at the international level dealing globally with cancers in persons with intellectual disability, therapeutically or scientifically, apart from rare specialized teams (Down syndrome leukemia, for example).

 

 

Oncodefi's answer

Combine care, documentation and research in one place in the world

 

Four pilot teams to treat patients with intellectual disability
 • Three teams for adults and one team for children at the University Hospital, at the Centre Anticancéreux Val d'Aurelle and at the Clinique de la Mutualité Beau Soleil, Montpellier.
 • The reception of patients in a suitable environment
 • Treatment tailored to the psychological and biological needs of patients
 • The availability of oncologic teams’ expertise with referring practitioners through the technological
means provided by telemedicine (telemonitoring, tele-expertise and telecare).

 

An online resource center
 • collecting data from more than 2,000 genetic diseases with intellectual disability
disseminated to the international medical and scientific communities

 • and to the families and professionals of intellectual disability to help them develop strategies for prevention, monitoring and screening
 • distributed during training and information seminars to professionals of intellectual disability, physicians and oncology teams

 

A research network offering new perspectives
 • addressing all the psychological, epidemiological and biological issues
 • enriched with interventional data, from original observations in persons with intellectual disability. For example, genetic diseases that protect against cancer. These data are transferable to the general population.
 • in collaboration with international and french teams. 

 

 Clinique Beau Soleil 1                                            CAC Vue a rienne                                chu
      Clinique Beau Soleil 
                                                    Centre Val d'Aurelle                                      CHU Arnaud de Villeneuve                             
                                                                                                

                  

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The progress of medicine in the service of all

 

Our wish is that patients are accompanied throughout their diagnostic and therapeutic journey
 • by our teams who provide them with expertise and professionalism
 • in full consideration of their psychological and relational difficulties to obtain their adherence to care, essential for good treatment
 • the frequency of cancer is reduced by an active and orientated surveillance and prevention.
 • the severity of the treatments and their side effects are greatly reduced because of the early discovery of the tumors. Radiotherapy and chemotherapy are adapted to their specificity.

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Families and management teams are aware of the good prevention practices, good reflexes and the behavior to be kept directed.
 • They reduce cancer frequency by preventing cancer and monitoring.
 • The moral responsibility and the burden of the families and management teams is significantly reduced because the tumors found early can be cured by less heavy treatments.

 

General practitioners and specialists have all the information for the prevention, monitoring and care to be provided to their patients with intellectual disability whether they are children or adults, for each condition, for each pathology, according to their needs:
Online at the reference site.
With telesupport from reference teams.
During the consultation meetings held by teleconference, with telemedicine facilitating links between the teams.

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Researchers from the international scientific community consult and enrich information gathered on genetic or non genetic diseases with mental retardation, on the conditions that promote cancer and those that protect against cancer. This sharing encourages avenues of research in these areas far too often disjointed.

 

  

 

To make a donation:
Indicate : ONCODEFI and send to
Maître Sophie Roussel
12 rue Jean Jaurès
34770 Gigean
Tel 04 67 78 20 62
sroussel@notaires.fr

Association ONCODEFI
Parc Euromédecine
209 avenue des Apothicaires
34090 Montpellier
09 83 54 85 13
contact@oncodefi.org