NCI-CONNECTions: A Rare Brain and Spine Tumor Blog
Read news and information on advances in rare brain and spine tumor research, treatment, and education from our experts. To receive new posts via email, subscribe to our NCI-CONNECTions newsletter.
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New Clinical Trial Tests a Kind of Precision Medicine Treatment for IDH-Mutant Brain TumorsA new trial investigates zotiraciclib as a treatment for people with recurrent gliomas containing an IDH1 or IDH2 mutation to control tumor growth and improve quality of life.
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Understanding the Unique Barriers Adolescents and Young Adults with Central Nervous System Cancers Face in Clinical CareIn a new systematic review, researchers identify the specific challenges that make it difficult for this patient population to enroll in clinical trials and seek specialized treatment.
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Community and Spirituality Help Five-Time Ependymoma Survivor Embrace DiagnosisPaul has lived with a recurring ependymoma of the brain and spine for most of his life. In that time, he has found connection in the NCI-CONNECT community, comfort in spirituality, and trust in his care team.
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A Data-Driven Approach to Self-Care After a Brain Tumor DiagnosisAs a physician and researcher, Debra learned to advocate for herself during treatment by finding reliable online sources, interviewing multiple care providers, and participating in a clinical study.
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New Study Reveals Data on Rare Central Nervous System Tumors to Inform Clinical Care and Evaluate Novel Cancer TreatmentsResearchers share up-to-date trends in brain and spine tumor incidence, prevalence, and survival that incorporate new classification standards.
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Former Nurse Accepts a New Reality After a Brain Tumor DiagnosisSteve was a nurse for many years and found meaning in caring for others. But when he was unable to return to work after being diagnosed with an IDH-mutated astrocytoma, he found other ways to lead a fulfilling life.
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Forging an Alliance of Care to Meet the Unmet Needs of Rare Brain and Spine Tumor PatientsProviders in the NCI-CONNECT Clinic collaborate with a patient’s local specialists to offer guidance and opportunities to participate in cutting-edge clinical trials.
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Classifying Brain and Spine Tumors More Precisely to Improve Patient Outcomes and CareNeuropathologist Dr. P.J. Cimino shares how he collaborates with NCI-CONNECT experts to improve diagnosis and care for people with rare brain and spine tumors.
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Navigating a Rare Brain Tumor Diagnosis: A Care Partner’s PerspectiveLiz never imagined that she would become a care partner to her vibrant husband Julio because of an ependymoma diagnosis. She shares their journey and how they work together as a team through the good times and the bad.
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Bringing the Patient, Caregiver, and Advocate Voice to Clinicians and Researchers to Better Understand SurvivorshipAdam Hayden and Kimberly Wallgren visited NCI to share their invaluable perspectives on survivorship and person-centered care in neuro-oncology.