The role of brain tumor advocacy groups

M Rhee, P Mui, C Cadogan, J Imerman… - Current neurology and …, 2014 - Springer
The brain tumor community is a unique, underserved population that has not seen
significant improvements in survival over the last four decades. In the search for effective …

PATIENT ADVOCACY-01 WHY IS NEURO-ONCOLOGY MISSING FROM CIVIL SOCIETY CANCER ADVOCACY AGENDA?

D Makumi, R Okumu, R Muya - Neuro-Oncology Advances, 2023 - academic.oup.com
BACKGROUND Cancer civil society and patient groups across Africa play a major role in
pressuring governments to develop, fund, and implement national cancer control plans and …

Optimizing eligibility criteria and clinical trial conduct to enhance clinical trial participation for primary brain tumor patients

EQ Lee, M Weller, J Sul, SJ Bagley… - Neuro …, 2020 - academic.oup.com
Building on an initiative to enhance clinical trial participation involving the Society for Neuro-
Oncology, the Response Assessment in Neuro-Oncology Working Group, patient advocacy …

[HTML][HTML] Implementing a primary healthcare framework: the importance of nursing leadership in developing and maintaining a brain tumor support Group

LJ Nichols - Number 4/August 2015, 2015 - ons.org
Background: Although brain tumor support groups have been available internationally for
many years, Liverpool Hospital in Australia has not traditionally provided this service. As a …

'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics

CQ Nguyen, D Kariyawasam… - Health …, 2022 - Wiley Online Library
Introduction Biomedical progress has facilitated breakthrough advanced neurotherapeutic
interventions, whose potential to improve outcomes in rare neurological diseases has …

The role of tumor board conferences in neuro-oncology: a nationwide provider survey

J Snyder, L Schultz, T Walbert - Journal of neuro-oncology, 2017 - Springer
The tumor board or multidisciplinary cancer meeting (MCM) is the foundation of high value
multidisciplinary oncology care, coordinating teams of specialists. Little is known on how …

Strategies for meaningful patient and public involvement in neuro-oncological research

K Piil, KB Johannessen, H Pappot - Neuro-Oncology Practice, 2024 - academic.oup.com
It is well-known how living with a central nervous system tumor can profoundly affect the
quality of life, primarily due to the high symptom burden, emotional distress and poor …

EXPLORING THE INTERPLAY BETWEEN BRAIN TUMOUR INITIATING CELLS AND THE TUMOUR MICROENVIRONMENT: POTENTIAL TARGETING STRATEGIES …

D Lubanska, S Alrashed, A Sorge… - Neuro-Oncology …, 2023 - academic.oup.com
Brain tumor banking provides an important resource for understanding the underlying
pathophysiology of brain tumors. It requires a multidisciplinary team, including …

Facilitating interventions and/or relationships in malignant brain tumors

P Salander - Advances in therapy, 2010 - Springer
Brain tumors have special oncological significance. The prognosis of brain tumors is mostly
poor, and they are also connected to functional and cognitive deficiencies, as well as …

Provider-reported challenges and barriers to referring patients to neuro-oncology clinical trials: a report from the Society for Neuro-Oncology member survey

JL Rogers, A Acquaye, E Vera, A Bates… - Neuro-oncology …, 2020 - academic.oup.com
Background Whereas much information exists in general oncology regarding the barriers to
clinical trial referral, those specific to neuro-oncology are not yet well known. Trial barriers …