Overview of
The Daniel Begg
Lung Cancer Molecular Diagnostics Program

The Daniel Begg Lung Cancer Molecular Diagnostics Program seeks to provide advanced lung cancer patients in Exon 20 and with other NSCLC and SCLC diagnoses with support, information,and guidance on the NIH/National Cancer Institute’s Rapid Autopsy Clinical Research Study to advance research on lung cancer and tumor heterogeneity. 

The final stage of a patient's cancer journey is undeniably difficult, both emotionally and physically. While the decision to donate one's body to cancer research may not be suitable for everyone, it is a profoundly honorable and selfless act. This choice can bring comfort and a sense of fulfillment during the patient's final days, and beyond. Research on lung cancer at the National Cancer Institute, both in the laboratory and clinical settings, has made significant progress thanks to the generous contributions of patients' time, effort, and tumor samples. The knowledge gained from these tissue donations offers promising prospects for future patients battling this devastating disease.

Below are essential details about the NCI’s Rapid Autopsy Clinical Research Program. The NCI will cover all costs, including transportation, inpatient hospice, and cremation. Patients interested in the program can reach out to Linda Scuito, Senior Research Nurse Specialist, at linda.sciuto@nih.gov or 240-760-6117. 


NCI Rapid Autopsy Program Key Points for Lung Cancer Patients: 

  • Eligibility - Adult patients with metastatic non-small cell lung cancer (NSCLC), and small cell lung cancer (SCLC) who have an expected survival of less than three months. The study will close after 275 patients have enrolled. 

  • Design - A rapid autopsy will be performed once a patient has passed away. Tissue will be obtained from the primary tumor site if identifiable. Multiple metastatic sites to assess tumor heterogeneity and immune microenvironment using deep sequencing and global genomic and proteomic analyses.

  • In-Patient Hospice - NIH Clinical Center offers an in-patient hospice program with new patient hospice suites that provide an at-home-like environment for patients and their families, equipped with a family room adjoining patient rooms, and small kitchens. 

  • Post Autopsy - Following the autopsy, the patient's legal next of kin will receive the following, should they wish to:

    • An initial autopsy report from the team the day after the autopsy. 

    • A full molecular report 8-10 weeks after the autopsy. 

    • A letter of appreciation from the NCI to the patient’s family for their selfless act. 

    • An Urn of their choosing (from the options presented by the NCI-appointed funeral home). 

    • 3 copies of the death certificate. 

 

The Daniel Begg Lung Cancer Molecular Diagnostics Program
is a vital part of ICAN's Cancer Patient Advocacy and Clinical Trials Program Advocacy Services.

ICAN is currently working on The Daniel Begg Lung Cancer Molecular Diagnostics Program. We are working to put together a Family and Friends Advisory Council for the The Daniel Begg Lung Cancer Molecular Diagnostics Program. If interested, please email us at Daniel.Begg.Program@askican.org.

If you would like to become involved as a donor and supporter or a member of our Cancer Research Literature team as a Research Team Leader (medical school students, physicians, nurses, and post-docs only please), you may reach us at Daniel.Begg.Program@askican.org.


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