POWR

POWR: the Patient/parent Osteosarcoma genome-Wide Registry

Led by Theresa Beech, POWR is a registry of genomic and medical history data for osteosarcoma which started within and by the osteosarcoma parent and patient community on-line. Currently believed to be the largest database of genomic and medical history for osteosarcoma in the world, POWR data is being used as part of the basis for osteosarcoma clinical trial justification, and on-going osteosarcoma preclinical research by researchers and doctors around the US. Theresa uses POWR data for her own research into osteosarcoma genetics using statistical, regression, pattern, and network analyses. Her research has been presented at research conferences and symposia around the US.

If you are interested in participating in POWR, have questions, or would like to contact us, please email us:

osteoregistry@gmail.com

POWR is a volunteer, patient and parent-led initiative completely independent of any medical institution. Everyone involved has been directly affected by osteosarcoma: parents and family members. We do this work because, having been ravaged by this horrible disease, we believe that by working together, pooling data and resources, we will help find a cure and better treatments for this beastly disease.

Some of the findings resulting from POWR include:

  • 7 distinct statistically significant and biologically relevant genetic sub-categories of osteosarcoma
  • 2 genes (MYC and ATRX) as being almost mutually exclusive and correlating to a particularly poor prognosis
  • 1 gene (RB1) correlates to a particularly good response to chemotherapy

POWR received IRB approval for data capture and analysis from Hummingbird IRB of Cambridge, MA in May, 2017, approval # 2017-26.

 

You can read more about the science behind POWR here.