Overview of
The Bailey Tra
Research Advocacy Program

The Bailey Tra Research Advocacy Program is devoted to infant, pediatric, and adolescent tumors that are driven by an exon 20 insertion mutation, whether EGFR exon 20 insertion or HER2 exon 20 insertion.

Exon 20 insertion mutations can be found in more than 25 separate cancers.

Bailey’s rare thalamic glioma is a brain tumor that is being driven by the EGFR exon 20 insertion mutation.

It's important for all pediatric and adolescent cancer patients to have molecular profiling of their tumors so that any actionable mutation or fusion may be found and thus targeted by an anticancer drug in the pipeline (or a drug that may debut in Phase 1 clinical trials in the future).

Because of our Generous Supporters, ICAN patients involved in
The Bailey Tra Research Advocacy Program
have access to the following information services:

  • A review and analysis of the patient's pathology report; review of the patient's medical history, diet, lifestyle and risk factors, current condition as well as any comorbid factors; and complete review of symptoms prior to presentation.
  • Referrals, at the patient contact's request, to medical oncologists, radiation oncologists, surgical oncologists, radiologists, interventional radiologists, anesthesiologists, and additional specialists relevant to the patient's ongoing care.
  • Referrals to support groups that may be of assistance in handling the emotional impact that cancer has on the patient and the patient's family.
  • Referrals to cancer-specific organizations that may be of assistance in addressing insurance issues or employment termination issues (because of diagnosis or disclosure of metastatic disease).
  • Review of the nature/amelioration of specific side effects from chemotherapy (such as nausea and neuropathy) as well as from other treatment modalities.
  • Discussion of the interaction of diet and cancer chemotherapy drugs based on recent studies.
  • Delineation of the symptoms about which the patient should alert his/her oncologist.
  • Discussion of relevant imaging technology.
  • Discussion of pain management issues and treatment options that can be addressed with the patient's medical team.
  • Explanation of the recommendations given or not given by the patient's physicians; assistance in answering the patient's questions which remain either after or between appointments with the medical team.
  • Review of the relevant radiotherapy/interventional radiology options which the patient contact, in turn, may discuss with his/her medical team.
  • Review the patient’s genomics, proteomics, transcriptomics, and immune cell studies to best prioritize clinical trial options and sequencing of therapies.
  • Analysis of relevant cancer clinical trials options as well as the nature and purpose of clinical trials using Remission Coach®.
  • Review of relevant cancer-specific drugs in the anticancer pipeline.
  • Review of all relevant and complementary and alternative medicine ("CAM") avenues.
  • Review of the merits of filing a "Single Patient IND for Compassionate or Emergency Use" for a specific experimental cancer drug, if relevant to the patient's situation.
  • Exploration of options that might reduce travel costs for the patient contact, such as Corporate Angels Network, as well as ICAN supporters who have volunteered to host a clinical trials patient in a particular city.

The Bailey Tra Research Advocacy Program
is a vital part of ICAN's Cancer Patient Advocacy and Clinical Trials Program Advocacy Services.

ICAN is currently working on The Bailey Tra Research Advocacy Program. We are working to put together a Family and Friends Advisory Council for the The Bailey Tra Research Advocacy Program. If interested, please email us at Bailey.Tra.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 Bailey.Tra.Program@askican.org.

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