Today, the White House Cancer Moonshot announced several important and novel initiatives to advance progress towards ending cancer as we know it. Highlighted in this announcement was NBTS’s commitment, made at the first White House Cancer Moonshot Brain Cancers Forum on Glioblastoma (GBM) & Diffuse Intrinsic Pontine Glioma (DIPG) during national Brain Tumor Awareness Month in May 2023, to launch a comprehensive effort to advance quality of life (QoL) research for people facing brain tumors.
“Because of the location and complex nature of brain tumors, patients experience a diverse spectrum of unique quality of life issues, including changes in feeling and function, as well as identity and sense of self and the loss of autonomy,” said David Arons, President and Chief Executive Officer of the National Brain Tumor Society. “We were grateful to participate in recent Cancer Moonshot events, which have sparked many additional conversations and catalyzed some collaborations to create the cures and quality of life our community urgently needs.”
As the White House fact sheet details, NBTS will create a new QoL Research Agenda, the first of its kind in the brain tumor space. This work will foster strong patient, clinician, researcher, and industry partnerships to support future QoL research, and NBTS will formally launch its QoL research funding agenda in early 2024.
To complement an already robust portfolio of research, advocacy, and patient support initiatives to conquer and cure brain tumors, NBTS has convened a stakeholder advisory group, including patients, care partners, clinicians, and researchers with diverse backgrounds and diagnoses. NBTS is hosting two in-person roundtable meetings this year to identify and prioritize the quality of life needs of adult, pediatric, and adolescent and young adult patients with brain tumors and their care partners and determine where research is most needed to drive progress forward.