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New survey suggests many Black cancer patients aren’t made aware of clinical trials

Clinical trials largely fail to enroll diverse patient populations — and in the last couple of years, patient advocates, the FDA and even a slate of…

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Clinical trials largely fail to enroll diverse patient populations — and in the last couple of years, patient advocates, the FDA and even a slate of pharma companies have taken steps to change that.

However, new research suggests that many Black patients aren’t made aware of trials in the first place.

Of 102 patients who self-identified as Black in a recent Metastatic Breast Cancer Alliance survey, 40% said that no one on their care team had discussed clinical trials. But more than 90% said they would be interested in learning about them, and 83% said they would be somewhat or very likely to consider participating.

“I do feel like the African American community are the last ones to know about these trials or may never know due to the color of our skin,” one respondent wrote, according to the report. “I only found about clinical trials through a nonprofit organization. Even though I found out through them I didn’t understand how to go about getting one and proceed forward.”

A number of barriers exist even after a patient becomes aware of a trial, with the MBC Alliance noting logistics (travel time and number of appointments) and expenses as some of the most prevalent challenges.

Stephanie Walker

“Unfortunately, a lot of the patients still have to work to have insurance to cover healthcare costs,” said Stephanie Walker, a patient advocate who helped launch the survey, dubbed the BECOME project. “So they can’t afford to take time off from their job without some kind of compensation, whether it’s a flat sum for the day or meal cost, parking, transportation, child care.”

Even then, exclusion criteria can disproportionately knock groups of patients out of studies they might otherwise be good candidates for. For example, some trials exclude patients with high blood pressure or diabetes, which affect Black adults at higher rates than white adults.

The BECOME project was initially spearheaded by Walker and Marina Kaplan, a fellow patient advocate who conducted a similar study back in 2019. Concerned that just under 9% of responses were from Black patients, Kaplan and Walker wanted to conduct another survey targeting Black patients with metastatic breast cancer. Walker took the lead a couple of years ago after Kaplan passed away.

The survey was conducted between late 2021 and early 2022 and was distributed on social media, via the MBC Alliance’s email list, through other nonprofits and ambassadors, and at local cancer centers. While Walker was aiming for 500 responses, she received 424, 102 of which were from patients who self-identified as Black.

“I feel trials are offered more to white people, making me feel as if I don’t matter to others,” another respondent wrote. “I’ve never even been given ANY info about [trials] and didn’t really know they were even an option.”

When Walker was diagnosed back in 2015, no one from her care team discussed clinical trials as an option — which shocked her, especially given that she is a registered nurse.

“I was educated. I’m a nurse, and still, nobody talked to me about it,” she told Endpoints News.

Of the 53 drugs approved in 2020, Black patients represented only about 8% of participants in the trials regulators based their decisions on. Asian participants made up just over 6% of clinical trials, and Hispanic participants less than 13%.

'Part of re­cov­ery is aware­ness': Pan­dem­ic casts harsh spot­light on in­dus­try-wide lack of di­ver­si­ty in clin­i­cal tri­als

“Look at how your clinical trials are set up. Make sure there is something in there for the patient, not just, you know, taking, taking, taking from the patient. Give something back to that patient,” Walker said.

During the pandemic, Walker said decentralized trials have made participation easier for patients. Instead of having to visit a trial site to have bloodwork or scans done, why not perform them locally?

Walker noted that in the future, she would love to see an expanded survey that addresses patients with other types of cancer.

“I just want to try really hard to get clinical trial makers and healthcare teams, to communicate with Black patients with metastatic breast cancer, [and] to encourage them to enter clinical trials,” she said.

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Aging at AACR Annual Meeting 2024

BUFFALO, NY- March 11, 2024 – Impact Journals publishes scholarly journals in the biomedical sciences with a focus on all areas of cancer and aging…

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March 11, 2024

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BUFFALO, NY- March 11, 2024 – Impact Journals publishes scholarly journals in the biomedical sciences with a focus on all areas of cancer and aging research. Aging is one of the most prominent journals published by Impact Journals. 

Credit: Impact Journals

BUFFALO, NY- March 11, 2024 – Impact Journals publishes scholarly journals in the biomedical sciences with a focus on all areas of cancer and aging research. Aging is one of the most prominent journals published by Impact Journals. 

Impact Journals will be participating as an exhibitor at the American Association for Cancer Research (AACR) Annual Meeting 2024 from April 5-10 at the San Diego Convention Center in San Diego, California. This year, the AACR meeting theme is “Inspiring Science • Fueling Progress • Revolutionizing Care.”

Visit booth #4159 at the AACR Annual Meeting 2024 to connect with members of the Aging team.

About Aging-US:

Aging publishes research papers in all fields of aging research including but not limited, aging from yeast to mammals, cellular senescence, age-related diseases such as cancer and Alzheimer’s diseases and their prevention and treatment, anti-aging strategies and drug development and especially the role of signal transduction pathways such as mTOR in aging and potential approaches to modulate these signaling pathways to extend lifespan. The journal aims to promote treatment of age-related diseases by slowing down aging, validation of anti-aging drugs by treating age-related diseases, prevention of cancer by inhibiting aging. Cancer and COVID-19 are age-related diseases.

Aging is indexed and archived by PubMed/Medline (abbreviated as “Aging (Albany NY)”), PubMed Central, Web of Science: Science Citation Index Expanded (abbreviated as “Aging‐US” and listed in the Cell Biology and Geriatrics & Gerontology categories), Scopus (abbreviated as “Aging” and listed in the Cell Biology and Aging categories), Biological Abstracts, BIOSIS Previews, EMBASE, META (Chan Zuckerberg Initiative) (2018-2022), and Dimensions (Digital Science).

Please visit our website at www.Aging-US.com​​ and connect with us:

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Click here to subscribe to Aging publication updates.

For media inquiries, please contact media@impactjournals.com.

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Government

Mathematicians use AI to identify emerging COVID-19 variants

Scientists at The Universities of Manchester and Oxford have developed an AI framework that can identify and track new and concerning COVID-19 variants…

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March 11, 2024

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Scientists at The Universities of Manchester and Oxford have developed an AI framework that can identify and track new and concerning COVID-19 variants and could help with other infections in the future.

Credit: source: https://phil.cdc.gov/Details.aspx?pid=23312

Scientists at The Universities of Manchester and Oxford have developed an AI framework that can identify and track new and concerning COVID-19 variants and could help with other infections in the future.

The framework combines dimension reduction techniques and a new explainable clustering algorithm called CLASSIX, developed by mathematicians at The University of Manchester. This enables the quick identification of groups of viral genomes that might present a risk in the future from huge volumes of data.

The study, presented this week in the journal PNAS, could support traditional methods of tracking viral evolution, such as phylogenetic analysis, which currently require extensive manual curation.

Roberto Cahuantzi, a researcher at The University of Manchester and first and corresponding author of the paper, said: “Since the emergence of COVID-19, we have seen multiple waves of new variants, heightened transmissibility, evasion of immune responses, and increased severity of illness.

“Scientists are now intensifying efforts to pinpoint these worrying new variants, such as alpha, delta and omicron, at the earliest stages of their emergence. If we can find a way to do this quickly and efficiently, it will enable us to be more proactive in our response, such as tailored vaccine development and may even enable us to eliminate the variants before they become established.”

Like many other RNA viruses, COVID-19 has a high mutation rate and short time between generations meaning it evolves extremely rapidly. This means identifying new strains that are likely to be problematic in the future requires considerable effort.

Currently, there are almost 16 million sequences available on the GISAID database (the Global Initiative on Sharing All Influenza Data), which provides access to genomic data of influenza viruses.

Mapping the evolution and history of all COVID-19 genomes from this data is currently done using extremely large amounts of computer and human time.

The described method allows automation of such tasks. The researchers processed 5.7 million high-coverage sequences in only one to two days on a standard modern laptop; this would not be possible for existing methods, putting identification of concerning pathogen strains in the hands of more researchers due to reduced resource needs.

Thomas House, Professor of Mathematical Sciences at The University of Manchester, said: “The unprecedented amount of genetic data generated during the pandemic demands improvements to our methods to analyse it thoroughly. The data is continuing to grow rapidly but without showing a benefit to curating this data, there is a risk that it will be removed or deleted.

“We know that human expert time is limited, so our approach should not replace the work of humans all together but work alongside them to enable the job to be done much quicker and free our experts for other vital developments.”

The proposed method works by breaking down genetic sequences of the COVID-19 virus into smaller “words” (called 3-mers) represented as numbers by counting them. Then, it groups similar sequences together based on their word patterns using machine learning techniques.

Stefan Güttel, Professor of Applied Mathematics at the University of Manchester, said: “The clustering algorithm CLASSIX we developed is much less computationally demanding than traditional methods and is fully explainable, meaning that it provides textual and visual explanations of the computed clusters.”

Roberto Cahuantzi added: “Our analysis serves as a proof of concept, demonstrating the potential use of machine learning methods as an alert tool for the early discovery of emerging major variants without relying on the need to generate phylogenies.

“Whilst phylogenetics remains the ‘gold standard’ for understanding the viral ancestry, these machine learning methods can accommodate several orders of magnitude more sequences than the current phylogenetic methods and at a low computational cost.”

Journal

Proceedings of the National Academy of Sciences

DOI

10.1073/pnas.2317284121

Article Title

Unsupervised identification of significant lineages of SARS-CoV-2 through scalable machine learning methods

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International

There will soon be one million seats on this popular Amtrak route

“More people are taking the train than ever before,” says Amtrak’s Executive Vice President.

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March 11, 2024

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While the size of the United States makes it hard for it to compete with the inter-city train access available in places like Japan and many European countries, Amtrak trains are a very popular transportation option in certain pockets of the country — so much so that the country’s national railway company is expanding its Northeast Corridor by more than one million seats.

Related: This is what it's like to take a 19-hour train from New York to Chicago

Running from Boston all the way south to Washington, D.C., the route is one of the most popular as it passes through the most densely populated part of the country and serves as a commuter train for those who need to go between East Coast cities such as New York and Philadelphia for business.

Veronika Bondarenko captured this photo of New York’s Moynihan Train Hall. 

Veronika Bondarenko

Amtrak launches new routes, promises travelers ‘additional travel options’

Earlier this month, Amtrak announced that it was adding four additional Northeastern routes to its schedule — two more routes between New York’s Penn Station and Union Station in Washington, D.C. on the weekend, a new early-morning weekday route between New York and Philadelphia’s William H. Gray III 30th Street Station and a weekend route between Philadelphia and Boston’s South Station.

More Travel:

According to Amtrak, these additions will increase Northeast Corridor’s service by 20% on the weekdays and 10% on the weekends for a total of one million additional seats when counted by how many will ride the corridor over the year.

“More people are taking the train than ever before and we’re proud to offer our customers additional travel options when they ride with us on the Northeast Regional,” Amtrak Executive Vice President and Chief Commercial Officer Eliot Hamlisch said in a statement on the new routes. “The Northeast Regional gets you where you want to go comfortably, conveniently and sustainably as you breeze past traffic on I-95 for a more enjoyable travel experience.”

Here are some of the other Amtrak changes you can expect to see

Amtrak also said that, in the 2023 financial year, the Northeast Corridor had nearly 9.2 million riders — 8% more than it had pre-pandemic and a 29% increase from 2022. The higher demand, particularly during both off-peak hours and the time when many business travelers use to get to work, is pushing Amtrak to invest into this corridor in particular.

To reach more customers, Amtrak has also made several changes to both its routes and pricing system. In the fall of 2023, it introduced a type of new “Night Owl Fare” — if traveling during very late or very early hours, one can go between cities like New York and Philadelphia or Philadelphia and Washington. D.C. for $5 to $15.

As travel on the same routes during peak hours can reach as much as $300, this was a deliberate move to reach those who have the flexibility of time and might have otherwise preferred more affordable methods of transportation such as the bus. After seeing strong uptake, Amtrak added this type of fare to more Boston routes.

The largest distances, such as the ones between Boston and New York or New York and Washington, are available at the lowest rate for $20.

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