Rare Disease

Improvement of diagnosis and treatment of adulthood post radiation GH deficiency in survivors of childhood cancer

Assistance Publique Hôpitaux de Paris- Hôpital Bicêtre
The goal of this project is to improve the quality of medical management of adult survivors of childhood cancer, in terms of assessment and treatment of pituitary and GHD deficiency.
Methods: To create a website providing information on childhood cancer’s late endocrine sequelae and a free MOOC dealing with post-radiation pituitary deficiency and its treatment over life and to offer on-line support and guidance to patients, relatives and medical practitioners in order to assess its efficiency in terms of percentage of patients that would be referred in Endocrinology departments and decrease in patient follow-up lost rate during transition and improve quality of information and level of health education in survivors and GPs about the long term consequences of their deficiencies.
Assessment: The satisfaction with the content, usability and design of the MOOC will be studied by a specific questionnaire completed at the end of the training. The number of website visits will be counted as well as the number of registrations to the MOOC. 
To evaluate the improvement in the rate of survivors who restart endocrine follow-up, or who remain on GH therapy after adolescence, a specific questionnaire will be sent to every participant in the MOOC, 6 and 12 months after their participation.
The perceived improvement in knowledge about childhood cancer late endocrine effects in survivors and medical practitioners will be addressed by the analysis of the difference in the quiz answers before and after the specific training with the MOOC. 
Full ProposalInterim ReportsFinal Report
Approval Date:
September 2017
Amount Awarded:
Start Date:
End Date:
In Progress
Improving the Identification and Management of Adult Growth Hormone Deficiency (AGHD)