DIPG Register werpt vruchten af

Dankzij de internationale samenwerking van het SIOPE DIPG Netwerk en het opzetten van een SIOPE DIPG Registry (beiden geïnitieerd door Stichting Semmy) kunnen de onderzoekers van VUmc Amsterdam veel beter onderzoek doen naar hersenstamkanker bij kinderen. Al meer dan 694 geanonimiseerde patiëntdata waaronder MRI scans en behandelmethodes zijn opgevoerd in het SIOPE DIPG Register, met de hoop dat de hoeveelheid data ervoor gaat zorgen dat er een oplossing komt voor deze -nog steeds dodelijke- ziekte bij kinderen.

Lees hier het persbericht dat 27 januari is verschenen vanwege de publicatie –> https://www.vumc.nl/afdelingen/voor-journalisten/persbericht/internationale-registratie-hersenstamkanker/

Hier kun je het wetenschappelijke artikel over het opzetten van het SIOPE DIPG Register lezen –> http://link.springer.com/article/10.1007/s11060-016-2363-y.

Belangrijkste stukken uit het artikel (Engels):

Development of the SIOPE DIPG network, registry and imaging  repository: a collaborative effort to optimize research into a rare and lethal disease

In January 2011, in a DIPG meeting organized by the Semmy Foundation in Amsterdam, the SIOPE DIPG Network was established as a sub-committee of the high-grade glioma (HGG) working group of International Society of Paediatric Oncology Europe (SIOPE).  With help from experts in the fields of information technology, and legal advisors, an international, web-based comprehensive database was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository.

The mission of the SIOPE DIPG Network is to serve as  a research-infrastructure for the design and execution of  high quality, international multicenter laboratory and clinical studies, intended to enhance the understanding of DIPG and to improve outcome of patients suffering from DIPG.

The establishment of the SIOPE DIPG Network and SIOPE DIPG Registry means a paradigm shift towards collaborative research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG.

To conclude, with the collaborative efforts of professionals treating children with DIPG, patient/parent organizations, legal advisors, experts in the field of information technology and imaging experts, an international research-infrastructure was successfully set up, which led to the development and initiation of the SIOPE DIPG Registry.

With already 694 patients registered, this Registry stimulates collaborative preclinical and clinical research efforts.

The existence of the International DIPG Registry, surveying similar data as the SIOPE DIPG Registry, allows for external cross-validation of data, generating robust data on the DIPG patient population. Big data analysis of the Registry’s data will potentially lead to the discovery of patterns that pave the way to the identification of effective therapies towards a cure for patients suffering from DIPG.

 

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