NCI Data Jamboree (Project Abstract Submission): Submission #21

Presenter Information
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First Name: Christina
Middle Initial: {Empty}
Last Name: Sisti
Degree(s): DPS, MPH, MS
Position/Title/Career Status: Research Ethics Patient Advocate
Organization: Advocates for Collaborative Education
Organization Address:
Santa Clara

Email: christina.sisti@advocatecollaborative.org

Additional Authors
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List of Additional Authors:
- First Name: Stacey
  Last Name: Tiniavov
  Post-nominal letters: MPH
  Affiliation: Advocates for Collaborative Education


Abstract Information
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Abstract Category: Developing tutorials, workbooks, infographics, or creative use of data for educational and engagement purposes
Abstract Keywords: ethics, patient, healthcare, clinical trials
Abstract Title: Comprehensive Access to Clinical Trials For Rare and Hyperaggressive Cancers
Abstract:
Rare and hyperaggressive cancers are treated with the accepted standard of care. However, many of these treatments are known to have little to no effect on stopping, maintaining, or curing these cancers. Decentralizing clinical trials will increase access to potentially groundbreaking treatments for those in vulnerable populations.
Often, those with rare or hyperaggressive cancers are faced with limited options and statistically are confronted with a high morbidity rate. The goal of this project is to change how access to clinical trials is determined. To achieve this, it is vital to consider the statistics surrounding rare or hyper-aggressive cancers, the number of clinical trials available, and those trials that offer compassionate use.  
Traditionally, clinical trials are administered at research, comprehensive cancer, or university centers. However, many cannot access this care due to a lack of transportation, childcare, and the ability to take time off from work. The alternative to the lack of access is to create a decentralized clinical trial system, allowing patients, regardless of their socio-economic situation, to access care at the center that offers the best possible outcome for their type of cancer. By doing so, not only is access increased, but so is equal opportunity to care. Equal access is a key component of the ethical considerations surrounding health care.
The goal is to discover how pairing clinical trials in once-inaccessible locations will increase participation in clinical trials as well as the use of compassionate care.