Dr. Pamela Kunz: Meaningful Involvement of Patients in NET Research
Dr. Pamela L. Kunz is Associate Professor of Internal Medicine (Medical Oncology) and Director, Center for Gastrointestinal Cancers at Smilow Cancer Hospital and Yale Cancer Center.
In this presentation recorded for INCA in 2023, Dr. Kunz explored how neuroendocrine cancer patient advocates and researchers can partner in identifying unmet needs and advancing NET knowledge.
- It is one thing to know cancer as a physician, but it is another to experience it first-hand as a patient.
- The importance of partnering with patients as a foundation for everything: from patient care, to research and clinical trials and education.
- Formalized cancer patient advocate training programs – a critical way for patients and patient advocates to empower themselves on how to best advise on cancer research and clinical trials.
- Patient advocates belong in all of the places where decisions are being made about them.
- The medical community needs to be intentional and deliberate in ways to include and partner with patients.
Dr. Jaydira Del Rivero: Practice-Changing Trials in NETs
Dr. Jaydira Del Rivero is a Medical Oncologist and Endocrinologist at the National Cancer Institute, National Institutes of Health in the USA.
In this presentation recorded for INCA in 2023, Dr. Del Rivero gives a snapshot of NET incidence, treatment landscape and the practice-changing clinical trials to date.
- We still need to understand more about the benefit of different therapies on different types of neuroendocrine tumors.
- A comprehensive classification system that incorporates tumor clinical stage, genomic and epigenetic expression profiles could serve to better define the biology of NET and hopefully establish correlations with clinical outcomes and develop effective therapies.
- Developing an easily accessible national and international patient engagement network for NET research and patient care with advocacy/support groups, will address the patient needs and increase access to research for patients.
- We need to discuss with the industry how to avoid redundancy and complement what is done instead of having competition – our ethics and moral need to play here to make therapies accessible for patients.
- We need to rethink how we run clinical trials so that therapies can be used by patients sooner.
Dr. Enrique Grande: How Clinical Practice Has Been Changed by Clinical Trials in the Last 10 Years
Dr. Enrique Grande, MD, PhD, Msc, is the Director of the Medical Oncology Program
and Clinical Research lead at the MD Anderson Cancer Center Madrid.
In this presentation recorded for INCA in 2022, Dr. Grande gives a snapshot of NET research,
how neuroendocrine cancer clinical trials change clinical practice, as well as outlines
potentially practice-changing trials.
- “PROMID TRIAL was first with SSA’s demonstrating delayed tumor growth. Prior to this, SSA’s only given to control symptoms so it was a major breakthrough to learn that SSA’s could control tumor growth for quite some time”
- “2011 was the next big breakthrough for treatments to postpone and delay the growth of PNETS in G1 and G2 tumors”
- “Gallium PET Scans allowed us to better identify tumor cells and their activity”
- “TELESTAR trial gave us tumor growth control and quality of life improvement”
- “We need better drugs to control the symptoms and the quality of life. It is important to live longer but it is also important to live better. Sometimes researchers are forgetting about this and that is why we need the patient’s input”
Prof. Jonathan Strosberg: Practice Changing Research in NETs
Prof. Jonathan R. Strosberg is President of NANETS (2022) and a medical oncologist in the Department of Gastrointestinal Oncology, section head of the Neuroendocrine Division and chair of the Gastrointestinal Department Research Program at Moffitt Cancer Center.
In a presentation еspecially recorded for INCA in 2022, Prof. Strosberg speaks about the current practice-changing clinical trials related to neuroendocrine cancer.
- “Alpha emitting PRRT using heavier particles with higher energy but shorter range is hoped to lead to better outcomes and lesser toxicity with two studies in progress”
- “There are often conflicts between the benefits for a patient in a trial vs the benefit for the data collected, e.g. when design is against a placebo”
- “Trials can be very burdensome on the patient but do patients really need to always be seen in person for follow-ups … telemedicine has proven very useful to reduce the patient burden”
- “We need more trials on poorly differentiated NECs and cell therapies with the potential for long-term remission”
- “There are conflicts between the benefits for a patient enrolling in a trial vs the outcome of the study”
Prof. Michael Michael: What is the Role of Patients in Trial Design and Efficacy
Prof. Michael is a Gastrointestinal and Neuroendocrine Medical Oncologist at the Peter MacCallum Cancer Centre, Melbourne.
In this presentation recorded especially for INCA in 2022, Prof. Michael speaks about NET clinical trials that are practice-changing, and highlights the gaps in current NET research, as well as the role of patients in clinical trials design.
- “We need to better define the disease biology to help us to better select an individualized treatment, in other words precision medicine, in terms of what is being done with other malignancies”
- “We need better biomarkers to predict disease behavior, and these need to be built in within all prospective research”
- “We also need better studies to define the sequential therapy for all sub-classes of neuroendocrine tumors”
- “Patients need to be involved in trial design to both refine and answer the right questions, to produce good quality results, and also to ensure that trial recruitment is completed”