Research

Introduction

• INCA’s Vision calls for global access to optimal treatments and advancement of trials to improve the length and quality of life while ultimately seeking cures for all forms of NETs.
• To help realize its vision, INCA is focused on equipping and empowering NET patients to bring robust participation in important trials and to play an active role in helping to shape patient-centered research.
• INCA seeks to educate, engage and advocate for clinical trials that make a difference and for patient involvement that brings greater attention to patient reported outcomes and improved quality of life.

This web section is dedicated to bringing forth regular information on INCA’s current initiatives and to provide on-going opportunities and tools for patients to learn about clinical trials and ideally participate in them.

IMPORTANT: If you are interested in participating in any of the clinical trials listed here, please contact your lead oncologist / NET team for consultation.
(See the Disclaimer below.)

INCA’s Recent Research Activities

• Over the past decade INCA has been a unique source of global perspective on NET patient experience, gaps, and needs around issues of quality of life and access to state-of-the-art NET treatment.
• In 2021, INCA took a major step in equipping members with the tools needed to play a more active role in the clinical trial process. We designed and conducted a Boot Camp to provide NET patient advocates with critical knowledge of the clinical trials research process. Several graduates of this program have used this knowledge in their organization’s advocacy and to empower patient engagement with research.

Current Activities:

We have worked with the INCA Research Committee and the Boot Camp (BC) graduates to launch multiple initiatives to connect these advocates and other members with NET leaders and active investigators. The aims of these activities were:

• • To bring forth the most current perspectives on important trials,
  • Foster direct collaborations with active investigators, and
  • Identify new tools that can facilitate patients’ access to trials that can truly make a difference in their care.

Initially we are producing information and tools in three key areas:

• NET Research Leader Perspectives on “Trials That Matter”
• Collaborations with active investigators
• Access to clinical trials with groundbreaking AI tools