Recap: Rally on Research EAO CRC

On June 24 and 25, 2021, Fight Colorectal Cancer (Fight CRC) and Dr. José Perea from Fundación Jiménez Díaz University Hospital in Madrid, Spain, virtually co-hosted the third annual early-age onset colorectal cancer (EAO CRC) international symposium, Rally on Research: EAO CRC.

More than 500 thought leaders, researchers, clinicians, and patient advocates from 35 countries across six continents came together to discuss the impacts of the rising rates of EAO CRC and what the advocacy and medical community can do to change this trend.

An initial group of about 60 medical experts and speakers gathered for the first EAO CRC International Symposium and workgroup meetings in 2019, and each year more advocates, clinicians, and researchers have joined the collaborative effort to push forward advancements in research and clinical care.

Rates of colorectal cancer (CRC) have been rising steadily since the mid-1990s and CRC was recently predicted to be the leading cause of cancer death in adults ages 20-49 by 2030. The fight to change this trend is more urgent than ever.

HISTORY OF THE EAO CRC SYMPOSIUM

The third edition of the symposium included a variety of forums for information exchange and idea generation, including panel discussions; breakout sessions; advocacy and scientific abstracts and poster presentations; and networking opportunities led by over 60 speakers across six continents.

Fight CRC partnered with a global planning committee composed of international CRC advocacy organizations and researchers from around the world to develop the dynamic and interactive agenda. This year for the first time, the symposium included a panel of patients and caregivers from four countries, as well as 15 discussion-based breakout sessions focused on specific topics of EAO CRC research, clinical care, and advocacy. We felt it was imperative to bridge the advocacy and scientific communities and create an engaging space to listen and learn from one another.

“There is incredible urgency worldwide to address EAO CRC from early detection to prevention and understanding what causes the disease. The only solution is a global approach – we have to keep the momentum, which requires researchers, clinicians, and advocates working alongside each other to make progress. I am thrilled at the overwhelming response to the Rally on Research but we have a lot of work to do to save lives. We must put the conversation into action.”

– Andrea (Andi) Dwyer, Adviser to Fight CRC Patient Education and Research, University of Colorado Cancer Center

If you missed the symposium, don’t fret. Below is a recap of what you missed. Video recordings from each of the sessions of the symposium are also available to watch.

WATCH THE RECORDINGS

Three objectives were posed for the two-day conference.

Build a collaborative international network to serve as a platform to raise awareness of the growing problem, as well as incentivize the creation of multisite studies focused on EAO CRC.

Hear the priorities and experiences from all the stakeholders involved – patients, clinicians, researchers, and advocates.

Share the current knowledge of the disease etiology, as well as the treatment and survivorship approaches, incorporating the implications for patients, in order to identify strategies to advance the solution to the problem.

“The Rally on Research really afforded a great opportunity to globally connect stakeholders. We heard from people in Hong Kong, the Netherlands, the U.S., the U.K., and more. The importance of hearing different perspectives on risk factors and tackling EAO, as well as approaches to screening, treating, and supporting those affected, is so valuable. This is how we encourage more research and out-of-the-box approaches. This is really how we change the delivery of service and the entire face of health care: keeping the dialogue open and current. I myself am an EAO stage III colon cancer survivor (diagnosed at 38), so the opportunity to educate, support, and share my challenges with patients and caregivers is very powerful for me in terms of giving back to the community that helped me survive. We all want to spare others from what we ourselves have experienced; be it physically and emotionally. Helping a mom or dad balance their own cancer care with their family’s needs is very healing for me.”

– Chana Cohen, BSW; Patient Support Specialist, Colorectal Cancer Canada

Discussions focused on the full continuum of care, including prevention and early detection, treatment, and survivorship. Several key themes carried across each of the sessions.

• EAO CRC patients around the world are experiencing similar challenges in relation to delayed diagnosis and need for comprehensive support in balancing careers, family, and side effects, even with differences in health care systems. Efforts to improve prevention and early detection, treatment, and survivorship care for EAO CRC must keep the needs and motivation of patients in mind.
• There is an urgent need for increased awareness of EAO CRC from providers and patients – recognizing that anyone can get CRC and raising awareness to improve paths to diagnosis. It is essential to involve primary care providers in these efforts for education and as champions to improve awareness among the profession that CRC cancer could be a possibility, even if the overall likelihood is low, and to ensure family history of cancer is being collected.
• Dedicated strategies are needed to identify the patients that may benefit most for specific treatment approaches in an equitable manner. This includes testing all CRC tumors for biomarkers and increasing opportunities to access clinical trials. There is a common misconception that clinical trials are a last resort, while in fact there are many types of clinical trials. When patients participate in clinical trials, they are voluntarily participating in carefully designed research studies that are aiming to find new ways to improve treatments and make life easier for patients with cancer.
• Treatment approaches need to consider the impacts on quality of life for young patients. Young patients often receive aggressive treatment regimens and careful consideration of balancing harms, benefits, and side effects so as not to overtreat patients is essential. This includes opportunities to explore fertility preservation.
• Multilevel factors are contributing to EAO CRC, i.e., it is unlikely there is a single cause leading to the rising rates. Therefore, multidisciplinary approaches and collaborations are needed to improve prevention and early-detection, treatment, and survivorship outcomes. International collaborations can facilitate the inclusion and dissemination of data, biospecimens, and experiences from patients and programs around the world.
• Greater federal funding for CRC research is also a critical factor to help determine why more and more young people are being diagnosed with CRC and to give us the tools to help change this trend.

“Attending the Rally on Research and EAO research is extremely important to me. My 22-year-old son was diagnosed with stage III CRC in 2016 after being misdiagnosed for months due to his age. Five months into treatment we were told the cancer had tricked them and got away from them. He passed away at 23 years old. It is absolutely imperative that the medical community recognizes that this cancer is happening in young adults. It is happening in teenagers; it is happening in preteens. No person should have a delay in diagnosis and treatment due to their age. I have three other boys that I am forever worrying about, which is why attending the EAO CRC symposium is critical to their health. Sharing [my son] Connor’s story is critical to saving other young lives. Maybe, just maybe, if a primary care physician in attendance thinks about Connor when presented with a young, athletic, healthy person, they won’t so easily dismiss symptoms to poor diet. Maybe, just maybe, they will think of the story of the young person that was misdiagnosed …”

-Carleen Taylor, Caregiver of EAO CRC Patient, U.S.

With expertise in living with and managing cancer, representation of patient and caregiver voices are crucial to bringing the collective patient experience to life and ensuring patient needs are at the center of research, clinical care practices, and policy efforts. At the Rally on Research, patient advocates had the opportunity to share their stories and engage in dialogue with fellow advocates and researchers about what advocates can do to influence change.

“Patient advocates and researchers have stepped up to address the public health crisis of EAO CRC. To include patients and caregivers from Europe, Canada, and beyond brought home the true breadth of this problem, and the problem that many are facing around the world … often feeling alone and helpless. The Rally on Research showed that there are many willing to help and share their knowledge.

“I loved that along with presentations of scientific abstract sessions from researchers, there were patient advocate abstracts, where we were able to access the presentations of over a dozen patient advocates sharing what they are doing in the fight. Also, the second day of the Rally provided small breakout sessions with leading researchers from around the world. I know that I truly felt part of a team – that in our own ways we are doing all that we can.

– Annie Delores, Fight CRC Research Advocate and Stage I Survivor, U.S.

Over the next year, Fight CRC will continue the efforts to advance EAO CRC research by supporting the worldwide network studying EAO CRC, engaging clinicians, researchers, patients, and advocates regarding the research and care priorities, updating knowledge through learning opportunities, and developing opportunities for new research collaborations and data sharing. The International Symposium will continue to be an annual convening of the international scientific and advocacy communities in summer 2022.

Be sure to sign up with Fight CRC to receive updates on how you can continue to engage in the fight. You can also follow the efforts of the Fight CRC EAO CRC expert workgroup online and on social media.