Rebecca D. Pentz
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View article: Exploring the ethical use of race in cancer research
Exploring the ethical use of race in cancer research Open
Objective To determine if race was used biologically, socially, or both ways in oncology cooperative group trials. Background The National Institute of Health defines race as a social construct that groups people based on physical appearan…
View article: Perceptions of whole‐body donation for biomedical research: An interview study with rural adults in Georgia
Perceptions of whole‐body donation for biomedical research: An interview study with rural adults in Georgia Open
Purpose This study aims to describe how rural residents in Georgia (USA) perceive organ donation and biomedical research on the recently deceased, the appropriate oversight and duration for this type of research, and the disclosures necess…
View article: Brain tumours as an unrecognized etiology of infantile epileptic spasms syndrome (IESS): The role of resective epilepsy surgery
Brain tumours as an unrecognized etiology of infantile epileptic spasms syndrome (IESS): The role of resective epilepsy surgery Open
Brain tumours are a rare cause of infantile epileptic spasm syndrome (IESS). Epilepsy surgery may be utilized in refractory IESS due to tumours, although reports are limited. We report an illustrative case of IESS which resolved after tumo…
View article: Patients’ Views on Paying to Participate in Clinical Trials
Patients’ Views on Paying to Participate in Clinical Trials Open
Despite mixed reactions about being asked to pay for study drugs, the majority of patients felt that people should not be prevented from having the option to participate and thus that these trials should not be prohibited. Continued unders…
View article: P.053 Biallelic SCN1A variants with divergent epilepsy phenotypes
P.053 Biallelic SCN1A variants with divergent epilepsy phenotypes Open
Background: Dravet syndrome and genetic epilepsy with febrile seizures plus (GEFS+) are associated with pathogenic variants in SCN1A . While most such cases are heterozygous, there have been 16 reported homozygous cases. We report two new …
View article: GR.3 Mortality in tuberous sclerosis complex: current understandings
GR.3 Mortality in tuberous sclerosis complex: current understandings Open
Background: Tuberous Sclerosis Complex (TSC) is a multisystemic neurocutaneous disorder in which hamartomas confer significant medical risks, including mortality, by disruption of local tissues. However, only recently have multiple studies…
View article: Supporting Patients with Cancer after Dobbs v. Jackson Women’s Health Organization
Supporting Patients with Cancer after Dobbs v. Jackson Women’s Health Organization Open
In the context of cancer, whether or not to choose pregnancy termination represents a difficult and multifaceted decision. In this editorial, members of The Oncologist editorial team attempt to contextualize the potential implications of t…
View article: Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study
Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study Open
Background Digital health tools, such as websites, now proliferate to assist individuals in managing their health. With user input, we developed the Your Family Connects (YFC) website to promote access to genetic services for survivors of …
View article: Mean global field power is reduced in infantile epileptic spasms syndrome after response to vigabatrin
Mean global field power is reduced in infantile epileptic spasms syndrome after response to vigabatrin Open
Purpose Infantile epileptic spasms syndrome (IESS) is associated with abnormal neuronal networks during a critical period of synaptogenesis and brain plasticity. Hypsarrhythmia is a visual EEG biomarker used to diagnose IESS, assess respon…
View article: Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study (Preprint)
Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study (Preprint) Open
BACKGROUND Digital health tools, such as websites, now proliferate to assist individuals in managing their health. With user input, we developed the Your Family Connects (YFC) website to promote access to genetic services for survivors of…
View article: Testing a Population-Based Outreach Intervention for Ovarian Cancer Survivors to Encourage their Close Relatives to Consider Genetic Counseling
Testing a Population-Based Outreach Intervention for Ovarian Cancer Survivors to Encourage their Close Relatives to Consider Genetic Counseling Open
Background: Most relatives of women with ovarian cancer are unaware of their increased risk for cancer and their eligibility for genetic counseling. State cancer registries offer a platform to communicate about inherited risk to this popul…
View article: Comparative analysis of breast and lung cancer survival rates and clinical trial enrollments among rural and urban patients in Georgia
Comparative analysis of breast and lung cancer survival rates and clinical trial enrollments among rural and urban patients in Georgia Open
These findings underscore the need for further research into the representation of rural patients with diverse cancer types at CCC and other cancer centers. Further, the findings have considerable implications for the initiation of positiv…
View article: Your Family Connects: A Theory-Based Intervention to Encourage Communication about Possible Inherited Cancer Risk among Ovarian Cancer Survivors and Close Relatives
Your Family Connects: A Theory-Based Intervention to Encourage Communication about Possible Inherited Cancer Risk among Ovarian Cancer Survivors and Close Relatives Open
Introduction: Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide r…
View article: Evaluation of Standard-of-Care Practices Among Physicians Who Treat Other Physicians
Evaluation of Standard-of-Care Practices Among Physicians Who Treat Other Physicians Open
Importance Ethical discussions have suggested that physicians who treat other physicians may put their physician-patients at risk of receiving non–standard-of-care treatment, which may result in worse outcomes. This phenomenon occurs when …
View article: Supporting Patients with Cancer after <i>Dobbs v. Jackson Women’s Health Organization</i>
Supporting Patients with Cancer after <i>Dobbs v. Jackson Women’s Health Organization</i> Open
In the context of cancer, whether or not to choose pregnancy termination represents a difficult and multifaceted decision. In this editorial, members of The Oncologist editorial team attempt to contextualize the potential implications of t…
View article: Therapeutic Misconception about Research Procedures: Does a Simple Information Chart Improve Understanding?
Therapeutic Misconception about Research Procedures: Does a Simple Information Chart Improve Understanding? Open
In phase I trials, some biospecimens are used both for research and patient care and some for research only. Some research participants have therapeutic misconception, assuming all biospecimens are for patient care. This study's aim was to…
View article: Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies
Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies Open
Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be …
View article: Dissemination of validated health literacy videos: A tailored approach
Dissemination of validated health literacy videos: A tailored approach Open
Background Previously, we showed that chemotherapy terminology is difficult for patients to understand. Therefore, we developed short videos explaining key terminology and though proven effective, they will only be helpful if appropriately…
View article: Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics
Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics Open
Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances…
View article: Understanding immunotherapy terminology: An analysis of provider‐patient conversations
Understanding immunotherapy terminology: An analysis of provider‐patient conversations Open
Background Immunotherapy terminology is complex and can be difficult for patients to understand, threatening informed consent. The aims of this exploratory study are to determine whether patients understand immunotherapy terminology and if…
View article: Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes
Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes Open
Some individuals’ understanding of informed consent (IC) information may improve with electronic delivery, but others may benefit from face-to-face (F2F). This randomized, multisite study explores how individuals from diverse backgrounds u…