Issues
Cancer networks for central nervous malignancies
Primary malignant tumors of the Central Nervous System (CNS) are rare malignancies with an overall incidence in European Countries ranging from 3.5 to 0.7 cases per 100000 in children and adult patients respectively.
These malignancies are associate to a significant rate of long-term disability and mortality burning out economic and physical resource of patients and caregivers.
It has been demonstrated that equips with proven expertise on the management and treatment of CNS tumors can improve patients’ survival and clinical outcome.
Unfortunately, not all cancer centers can offer a dedicate team to patients affected by CNS tumors and sometime patients and caregivers are obligated to migrate far from their residence. Furthermore, clinical research on these tumors represents a challenge due to the rarity, low incidence of these malignancies.
It is often observed that patients with aggressive disease such as glioblastoma are rarely included in clinical trials despite the availability of only few effective treatments.
These problems could be bypassed adopting a centralization of patients in reference centers with specific expertise in CNS tumors, but this could be expensive and tiring for patients and caregivers.
Cancer networks are profit or no profit associations aimed to sustain patients, caregivers, clinicians and scientist on different aspect of cancer care.
There are several ways by which these networks can support patients, researchers, and brain tumor pathway of care:
- Orienting patients and caregivers toward the nearest reference centers more likely to provide a high standard of care or with an active clinical trial for their specific malignancies;
- Creating and coordinating a network between reference centers and other centers to share clinical, scientific, and research data;
- Supporting development and progress of trials between several centers;
- Supporting research integrating data from translational, pre-clinical, and clinical research;
- Optimizing the enrollment of patients within clinical trials fasting the time required for study results, offering innovative treatment for CNS patients, and reducing the risk of premature closure of the study due to slow accrual;
- Promoting training, upgrading health care workers, and developing evidence-based directives for rare cancer diagnosis and care;
- Sharing information about CNS tumor incidence, morbidity, and mortality to Institutions in order to optimize available resources assignment;
- Providing economic and logistic support to patients and caregivers during care.
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