The mission with the PaediatricData.EU website is ultimately to promote progress of medical research and treatment development for children through showing how changes proposed by established stakeholders translate into practice, and through more quantitatively informing further policies.
Thw website was created to present ideas about how to evaluate the progress in treating children with a serious disease, in particular children with cancer. For children with cancer, progress in outcomes is a long-standing issue. Children require specific medicines for their specific diseases. The approach has reversed, from protecting children from research and preventing them from experiencing its benefits, to now protect children through research and participation. (See discussion for example in .)
Examples of indicators described in this website show the complexities in improving outcomes for children and in measuring progress. (See for other sets of indicators for example ).
Feedback and suggestions are welcome and invited with the form below.
References
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