About the Registry
The Embryonal Tumor with Abundant Neuropil and True Rosettes (ETANTR) registry is a collaborative effort by physicians and researchers in Canada spearheaded by the Alexander's Quest Foundation.
ETANTR is a recently described distinctive subtype of primitive neuroectodermal tumor (PNET) that typically affects children who are under the age of four at the time of diagnosis. ETANTR is extremely rare and aggressive with a median survival rate of less than 12 months. Although radiation and chemotherapy can shrink the tumors and temporarily delay the progression of the disease, in most cases the tumours continue to grow.
At this time there are approximately 300 documented cases of ETANTR world wide. This, coupled with the fact that there is only one ETANTR cell line in existence, makes it difficult for researchers to find effective treatments. The registry will focus its efforts on collecting information and tumor samples from patients around the world and make it available to ETANTR researchers. Our goal is to aid researchers in extending the life of children with ETANTR and ultimately to find a cure.