BenjaminWilfondMD

PubMed

• 4 citations
  To Swab or Not to Swab: Waiver of Consent to Collect Perianal Specimens from Incapacitated Patients With Severe Burn Injury.
  Liza Dawson, Andrew D Ray, Benjamin S Wilfond, Liza-Marie Johnson> ;The American Journal of Bioethics. 2024 Apr 1
• Motivations for and against Participation in Neonatal Research: Insights from Interviews of Diverse Parents Approached for Neonatal Research in the US.
  Pamela K Donohue, Susan H Wootton, Emily Stevens, Amanda Mercer, Ellie Oslin, Kathryn M Porter, Elliott Mark Weiss, Stephanie L Merhar, Mihai Puia-Dumitrescu, Benjamin...> ;The Journal of Pediatrics. 2024 Mar 14
• The American Association for Thoracic Surgery (AATS) 2023 Expert Consensus Document: Recommendation for the care of children with trisomy 13 or trisomy 18 and a congen...
  James D St Louis, Aarti Bhat, John C Carey, Angela E Lin, Paul C Mann, Laura Miller Smith, Benjamin S Wilfond, Katherine A Kosiv, Robert A Sorabella, Bahaaldin Alsoufi> ;The Journal of Thoracic and Cardiovascular Surgery. 2024 May 1
• Evaluation of mailed results versus telephone disclosure of normal cancer genetic test results in a low-risk underserved population.
  Gilmore, M., Leo, M., Amendola, L., Goddard, K., Hunter, J., Joseph, G., Kauffman, T., Rolf, B., Shuster, E., Zepp, J., Biesecker, B., Wilfond, B.> ;Translational Behavioral Medicine. 2024 Jan 8
• Improving Care for Marginalized Populations at Risk for Hereditary Cancer Syndromes: Innovations that Expanded Reach in the CHARM Study.
  Marian J Gilmore, Sarah Knerr, Stephanie A Kraft, Joanna E Bulkley, Barbara B Biesecker, Heather Spencer Feigelson, Jessica Ezzell Hunter, Charisma L Jenkins, Tia L Ka...> ;Public Health Genomics. 2024 Jan 1
• 1 citations
  Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation.
  Renee D Boss, Holly H Vo, Nicholas A Jabre, Jennifer Shepard, Amanda Mercer, Anne McDermott, Chisa L Lanier, Yuanyuan Ding, Benjamin S Wilfond, Carrie M Henderson> ;PEC Innovation. 2023 Dec 1
• 1 citations
  Experiences and preferences for learning about neonatal research: insights from parent interviews.
  Elliott Mark Weiss, Kathryn M Porter, Ellie Oslin, Mihai Puia-Dumitrescu, Pamela K Donohue, Stephanie L Merhar, Emily Stephens, Amanda Mercer, Benjamin S Wilfond> ;Journal of Perinatology. 2024 Mar 1
• Parent Perspectives on the Child Experience of Pediatric Home Ventilation via Tracheostomy.
  Holly Hoa Vo, Amanda H Mercer, Nicholas A Jabre, Carrie M Henderson, Renee D Boss, Benjamin S Wilfond> ;Hospital Pediatrics. 2023 Dec 1
• 4 citations
  Researcher Obligations to Participants in Novel COVID-19 Vaccine Research.
  Benjamin S Wilfond, Devan M Duenas, Liza-Marie Johnson> ;The American Journal of Bioethics. 2023 Oct 1
• Risk management actions following genetic testing in the Cancer Health Assessments Reaching Many (CHARM) Study: A prospective cohort study.
  Boya Guo, Sarah Knerr, Tia L Kauffman, Kathleen F Mittendorf, Erin Keast, Marian J Gilmore, Heather Spencer Feigelson, Frances L Lynch, Kristin R Muessig, Sonia Okuyam...> ;Cancer Medicine. 2023 Sep 1
• 1 citations
  Distinguishing Clinical and Research Risks in Pragmatic Clinical Trials: The Need for Further Stakeholder Engagement.
  Benjamin S Wilfond, Sinem Toraman Turk, Stephanie A Kraft, Elliott M Weiss, Philip I Tarr, David Schnadower, Stephen B Freedman> ;The American Journal of Bioethics. 2023 Aug 1
• Longitudinal adherence to breast cancer surveillance following cancer genetic testing in an integrated health care system.
  Sarah Knerr, Boya Guo, Karen J Wernli, Kathleen F Mittendorf, Heather Spencer Feigelson, Marian J Gilmore, Gail P Jarvik, Tia L Kauffman, Erin Keast, Elizabeth G Liles...> ;Breast Cancer Research and Treatment. 2023 Oct 1
• 3 citations
  Most people share genetic test results with relatives even if the findings are normal: Family communication in a diverse population.
  Jessica Ezzell Hunter, Leslie Riddle, Galen Joseph, Laura M Amendola, Marian J Gilmore, Jamilyn M Zepp, Elizabeth Shuster, Joanna E Bulkley, Kristin R Muessig, Katheri...> ;Genetics in Medicine. 2023 Nov 1
• 2 citations
  Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation.
  Holly Hoa Vo, Benjamin S Wilfond, Yuanyuan Ding, Carrie M Henderson, Jessica C Raisanen, Gary Ashwal, Alex Thomas, Nicholas A Jabre, Kelly J Shipman, Ann Schrooten, Je...> ;Patient Education and Counseling. 2023 Sep 1
• 2 citations
  Donor perspectives on informed consent and use of biospecimens for brain organoid research.
  Katherine E MacDuffie, Jason L Stein, Dan Doherty, Suman Jayadev, Jessica B Girault, Katherine A Emmons, Madison Rose Glass, Jennifer C Dempsey, Natasha Marrus, Kelly ...> ;Stem Cell Reports. 2023 Jul 11
• 2 citations
  Hyperhydration to Improve Kidney Outcomes in Children with Shiga Toxin-Producing E. coli Infection: a multinational embedded cluster crossover randomized trial (the HI...
  Stephen B Freedman, David Schnadower, Myka Estes, T Charles Casper, Stuart L Goldstein, Silviu Grisaru, Andrew T Pavia, Benjamin S Wilfond, Melissa Metheney, Kadyn Kim...> ;Trials. 2023 May 27
• Evaluating cancer genetic services in a safety net system: overcoming barriers for a lasting impact beyond the CHARM research project.
  Sonia Okuyama, Larissa L White, Katherine P Anderson, Elizabeth Medina, Sonia Deutsch, Chelese Ransom, Paige Jackson, Tia L Kauffman, Kathleen F Mittendorf, Michael C ...> ;Journal of Community Genetics. 2023 Jun 1
• 1 citations
  Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta.
  Kathryn M Porter, Stephanie A Kraft, Candace D Speight, Devan M Duenas, Nyiramugisha K Niyibizi, Andrea Mitchell, M Rebecca O'Connor, Charles Gregor, Kendra Liljenquis...> ;JAMIA Open. 2023 Apr 1
• 3 citations
  Medical interpreter-mediated genetic counseling for Spanish preferring adults at risk for a hereditary cancer syndrome.
  Galen Joseph, Nangel M Lindberg, Claudia Guerra, Cindy Hernandez, Leah S Karliner, Marian J Gilmore, Jamilyn Zepp, Bradley A Rolf, Mikaella Caruncho, Leslie Riddle, Ti...> ;Journal of Genetic Counseling. 2023 Aug 1
• 9 citations
  The PrU: Development and validation of a measure to assess personal utility of genomic results.
  Erin Turbitt, Jennefer N Kohler, Frank Angelo, Ilana M Miller, Katie L Lewis, Katrina A B Goddard, Benjamin S Wilfond, Barbara B Biesecker, Michael C Leo> ;Genetics in Medicine. 2023 Mar 1
• Measuring high-risk parents' opinions about direct-to-consumer genetic testing for adult-onset inherited cancer syndromes in their adolescent and young adult children.
  Emily Hasser, Beth N Peshkin, Jada G Hamilton, Jamie Brower, Hannah Ovadia, Lainie Friedman Ross, Rosalba Sacca, Beth Tarini, Susan M Domchek, Sarah Vittone, Marcelo S...> ;Journal of Genetic Counseling. 2023 Aug 1
• Incentives in Pediatric Research in Developing Countries: When Are They Too Much?
  Erwin Jiayuan Khoo, Devan M Duenas, Benjamin S Wilfond, Luke Gelinas, Armand H Matheny Antommaria> ;Pediatrics. 2023 Feb 1
• 4 citations
  "What Would Give Her the Best Life?": Understanding Why Families Decline Pediatric Home Ventilation.
  Kelly J Shipman, Amanda H Mercer, Jessica C Raisanen, Nicholas A Jabre, Holly Hoa Vo, Alison Miles, Jennifer Shepard, Carrie M Henderson, Renee D Boss, Benjamin S Wilfond> ;Journal of Palliative Medicine. 2023 Jul 1
• 2 citations
  Validation of a Process for Shared Decision-Making in Pediatrics.
  Douglas J Opel, Holly Hoa Vo, Nicolas Dundas, Heather Spielvogle, Amanda Mercer, Benjamin S Wilfond, Jonna Clark, Carrie L Heike, Elliott M Weiss, Mersine A Bryan, See...> ;Academic Pediatrics. 2023 Jan 20
• Refining a Multifaceted Model of Perceived Utility of Genomic Sequencing Results.
  Devan M Duenas, Leslie Riddle, Claudia Guerra, Mikaella Caruncho, Hannah Lewis, Kathryn M Porter, Stephanie A Kraft, Barbara Biesecker, Marian J Gilmore, Jamilyn M Zep...> ;Public Health Genomics. 2023 Jan 1
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Journal Articles

• Secondary Findings from Clinical Genomic Sequencing: Prevalence, Patient Perspectives, Family History Assessment, and Health-Care Costs from a Multisite Study  
  Kyle B Brothers, Joel B Krier, Benjamin S Wilfond, Jonathan S Berg, Laura M Amendola, Sharon E Plon, Jason L Vassy, Gail P Jarvik, Heidi L Rehm, Robert C Green, Nature
• The Evolving Landscape of Expanded Carrier Screening: Challenges and Opportunities  
  Benjamin Wilfond, MD, Nature