Jennifer Ivanovich: It is never too late to join a community to bring positive change for children with cancer
Jennifer Ivanovich, Associate Professor of Clinical Medical and Molecular Genetics at Indiana University School of Medicine, shared on LinkedIn:
“As we begin to prepare for the holidays let us remember all the CHILDREN DIAGNOSED WITH CANCER. Their holidays will be filled with hospital admissions, surgical procedures, bone marrow biopsies, infusions, scans, lost time with family and friends, and many days of recovery. It is never too late to join a community with the shared purpose to bring about positive change for children with cancer.
A diagnosis of cancer in a child is devastating for every family. This diagnosis comes with an added layer of complexity for children with underlying medical issues or developmental differences. Children with Down syndrome are at increased risk to develop B-ALL. Recently, Rabin et al. published a case-control study evaluating the outcomes of over 700 children with Down syndrome and ALL compared to over 20,000 children with ALL. Five-year event-free survival and overall survival were significantly poorer for children with Down syndrome.
A recent article examined various psychosocial factors surrounding inherited genetic testing (germline analysis) of children diagnosed with cancer. Parents who learned their child had an inherited cancer predisposition experienced a higher level of psychosocial distress. As tumor and germline testing become “routine” for all children with cancer, these studies point to significant need for tailored support and education.
In a related study, Wakefield and colleagues interviewed adolescents with cancer and their parents regarding their participation in a precision medicine clinical trial. These trials utilize somatic & germline analysis to identify therapeutic options. This study showed children and their parents rarely regretted participating in the trial regardless when the outcome did not match their hopes from the trial.
Dr. Ami Bera, (D-CA) and Mike Kelly (R-PA) introduced the Data for Pediatric Brain Cancer Act 2023. Significant barriers exist in conducting large clinical trials for people with rare cancers. To help address some of these obstacles, the proposed legislation would develop a registry for children with atypical teratoid/rhabdoid tumors (ATRT) with an appropriation of $2,000,000 in 2025. ATRTs are aggressive tumors that typically develop in children younger than 3 years. Over one-third of children with a rhabdoid tumor have a gene mutation in their inherited DNA.
Learn more about the good work of the Coalition Against Childhood Cancer (CAC2).”
Source: Jennifer Ivanovich/LinkedIn
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