A special registry to keep track of wonders and failures to build a better future

This project was selected in the framework of our European call: FIGHT KIDS CANCER 2022. It is jointly financed by Imagine for Margo, Kriibskrank Kanner Fondatioun and KickCancer.

It is thanks to your participation in RUN TO KICK 2022 that this innovative project is funded! Register for RUN TO KICK 2023 and help us finance 9 new innovative research projects!

Today, when a child with cancer runs out of standard treatment options, they will seek treatment in the framework of a clinical trial in the hope to cure or at least to extend their life.

In the framework of a clinical trial, all the data about the effect of the tested drug are recorded with the specific intent to determine whether the tested drug is effective and its toxicity is acceptable. Unfortunately, today, there are not enough relevant clinical trials for most of the children for which the current treatments are not effective.

More often than not, as a result, those children with cancer will be treated with a novel drug off-label, in the framework of a compassionate use or medical need programme. In such a case, the clinical data of the patients are lost, when in fact we would need to detect unnecessary toxicity or remarkable efficacy.

This is exactly what the SACHA international registry will do: collect real-life data about innovative therapies administered outside clinical trials to children, adolescents and young adults with paediatric malignancies. These real-life data will help to: 1) recommend the halt of the prescription of the drugs that show to be ineffective or have an unacceptable toxicity, 2) support the development of paediatric clinical trials when new anti-tumour activity is observed.

SACHA international is built on the previous experience of the SACHA France pilot initiated by the French Society of Paediatric Oncology (SFCE) that has included more than 280 patients since March 2020, confirming the feasibility of this type of registry. SACHA International is an initiative from the Innovative Therapies for Children with Cancer (ITCC) Consortium and plans to include 500 patients per year over three years in several European countries, as well as Australia and New Zealand.