Awareness on Cancer in Persons With Intellectual Disabilities (ONCODEFI)
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT02898363|
Recruitment Status : Completed
First Posted : September 13, 2016
Last Update Posted : January 31, 2017
Context People with intellectual disability (PWIDs), nearly 1,300,000 adults and children in France, develop as many cancers as persons in the general population. However, their tumors are different by their particular organ distribution, the age of onset, the biological background (2,000 genetic conditions are associated with an intellectual disability) and above all the unusual clinical presentation. These cancers are not well known from physicians, carers and families, and often discovered late. A recent review of the literature shows many inequalities in the prevention, monitoring, screening, diagnosis and treatment of cancer in these patients. Currently, no population study on clinical features and stage at diagnosis of cancer in PWIDs is available. No interventional research study has been conducted on this subject.
Hypothesis Investigators hypothesize that inequalities in cancer care of PWIDs do not result from a direct link between intellectual disability and cancer, but are related to diagnosis difficulties of these tumors which are not well known, and to difficulties of communication with these patients who do not express easily their symptoms, particularly pain.
|Condition or disease||Intervention/treatment|
|Cancer||Other: Information campaign|
|Study Type :||Observational|
|Actual Enrollment :||80 participants|
|Observational Model:||Ecologic or Community|
|Official Title:||Awareness on Cancer in Persons With Intellectual Disabilities|
|Study Start Date :||March 2013|
|Actual Primary Completion Date :||September 2016|
|Actual Study Completion Date :||September 2016|
- Other: Information campaign
During a two-year information program, physicians, mainly general practitioners, carers in and outside institutions, associations and families will be informed on cancer frequency, on cancer particularities and on cancer detection in persons with intellectual disabilities by means of documents, mails and e-mails, meetings and a website providing all available useful information on cancer in persons with intellectual disabilities.
- Cancer incidence among persons with intellectual disabilities [ Time Frame: Change from baseline (i.e. years -4 through -1) to years 1 through 3 ]
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02898363
|IURC - Laboratoire de Biostatistique d'Epidémiologie et de Recherche Clinique|
|Montpellier Cedex 5, France, 34093|
|Study Director:||Daniel Satgé, MD, PhD||IURC - Laboratoire de Biostatistique d'Epidémiologie et de Recherche Clinique|