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Thrombosis research gives patients access to ‘cutting edge’ care

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Clinical trials getting underway in Niagara Health’s Thrombosis Service will give patients access to some of the newest treatments for preventing deadly blood clots.

Some of those trials include the ANTHOS trials, investigating promising novel blood thinners that aren’t yet available to patients and doctors elsewhere.

“You can go all over Canada and lots of places have never heard of these medications,” says Dr. Blair Leonard, Director of Niagara Thrombosis Service and Regional Physician Lead for Benign Hematology and Thrombosis. “That’s how cutting edge these are and this research is.”

It’s research that’s also vitally important for treating and managing a common yet serious condition that’s also preventable.

One in four people die from causes related to thrombosis, which is the formation of potentially deadly blood clots in the artery (arterial thrombosis) or the vein (venous thromboembolism or VTE). Once formed, a clot can slow or block normal blood flow. It can even break loose and travel to an organ, resulting in disability or death.

The Niagara Thrombosis Service is currently participating in four clinical trials whose findings will benefit patients around the world. The other studies include the SAVER Trial, a multi-centre investigation to determine if statins, a cholesterol-lowering medication, can help prevent VTE; and the TRIM-Line Trial, looking at strategies to prevent blood clots in patients using PICC lines.

With the groundwork being laid for a fifth study dealing with post-thrombotic syndrome (PTS), which is the ongoing symptoms of blood clots, Niagara Health has positioned itself as a leader in thrombosis research.

Proving Niagara Health’s research prowess

And it’s done so in a short time under the leadership of Dr. Leonard, who steered the launch of Niagara Health’s Thrombosis Service in 2015 to satisfy the need for focused thrombosis care in the region.

Previously, thrombosis patients were treated by generalists or had to travel outside Niagara for specialized care, and only if physicians and programs elsewhere elected to take them on. Today, Niagara Health’s Thrombosis Service has five dedicated thrombosis specialist physicians, including Dr. Leonard, who run two clinics every day at the St. Catharines Site, and provide 24/7 patient coverage across the region.

“The plan when we launched was to satisfy the tremendous clinical need, then branch into research and teaching,” Dr. Leonard says, adding the service took on its first resident last year.

Dr. Leonard began demonstrating Niagara Health’s prowess in thrombosis research in 2018 when he used retrospective data to investigate the use of warfarin, a common blood thinner, in patients with heart valves.

In 2021, he published preliminary results about VTE prophylaxis in outpatient oncology patients at the Walker Family Cancer Centre. Over the last three years, the thrombosis team participated in the COACHED clinical trial with McMaster University that looked at inpatient use of warfarin and the need for monitoring and adjusting dosing during the transfer of care back to family physicians.

That work set up Niagara Health for a significant grant from the Ottawa Hospital Research Institute (OHRI) to participate in larger, randomized patient trials, like those currently in the works, and expand the team to add Research Assistant Kailee Morrison.

“We started to get recognition as a place that had keen research interest and potential,” Dr. Leonard says. “The main thing is OHRI saw our desire to be involved in research and how innovative we were at attracting research with limited resources.”

Providing high-quality patient care

Morrison, who joined Niagara Health in January, helps with research ethics applications and works with Dr. Leonard to identify and recruit patients. She also provides training to study participants and does non-medical follow-up throughout trials. That includes regular patient check-ins, reviewing patient charts and keeping the lines of communication between participants and the research team open.

The trials vary in length from 90 days to three years, and retention can be a challenge for longer studies, she notes. The success of the trials depends on the ability to ethically recruit patients, however, with one study needing as many as 144 people.

Most participants will come from the Walker Family Cancer Centre because thrombosis is a common complication of chemotherapy, Morrison explains. But the hope is to work with departments throughout Niagara Health to recruit a wide variety of study candidates.

“For some of the trials, we won’t have patients walking into the (thrombosis) clinic,” she says. “We want them to not just send us patients but we want them to send us patients because the patient benefits from participating.

“Seeing people go through these and for the whole duration will be really rewarding.”

Ultimately, the goal is to continue expanding the breadth of thrombosis research at Niagara Health and with it, provide the highest quality, most up-to-date care to patients.

“Our research division brings cutting edge care to Niagara,” Dr. Leonard says. “When we launched the service, we expected to have a dramatic effect on improved treatment in VTE and PTS. We’ve done that and we wouldn’t have had that without the emphasis on research here from our humble beginnings.”

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Here is how to prepare your online accounts for when you die

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LONDON (AP) — Most people have accumulated a pile of data — selfies, emails, videos and more — on their social media and digital accounts over their lifetimes. What happens to it when we die?

It’s wise to draft a will spelling out who inherits your physical assets after you’re gone, but don’t forget to take care of your digital estate too. Friends and family might treasure files and posts you’ve left behind, but they could get lost in digital purgatory after you pass away unless you take some simple steps.

Here’s how you can prepare your digital life for your survivors:

Apple

The iPhone maker lets you nominate a “ legacy contact ” who can access your Apple account’s data after you die. The company says it’s a secure way to give trusted people access to photos, files and messages. To set it up you’ll need an Apple device with a fairly recent operating system — iPhones and iPads need iOS or iPadOS 15.2 and MacBooks needs macOS Monterey 12.1.

For iPhones, go to settings, tap Sign-in & Security and then Legacy Contact. You can name one or more people, and they don’t need an Apple ID or device.

You’ll have to share an access key with your contact. It can be a digital version sent electronically, or you can print a copy or save it as a screenshot or PDF.

Take note that there are some types of files you won’t be able to pass on — including digital rights-protected music, movies and passwords stored in Apple’s password manager. Legacy contacts can only access a deceased user’s account for three years before Apple deletes the account.

Google

Google takes a different approach with its Inactive Account Manager, which allows you to share your data with someone if it notices that you’ve stopped using your account.

When setting it up, you need to decide how long Google should wait — from three to 18 months — before considering your account inactive. Once that time is up, Google can notify up to 10 people.

You can write a message informing them you’ve stopped using the account, and, optionally, include a link to download your data. You can choose what types of data they can access — including emails, photos, calendar entries and YouTube videos.

There’s also an option to automatically delete your account after three months of inactivity, so your contacts will have to download any data before that deadline.

Facebook and Instagram

Some social media platforms can preserve accounts for people who have died so that friends and family can honor their memories.

When users of Facebook or Instagram die, parent company Meta says it can memorialize the account if it gets a “valid request” from a friend or family member. Requests can be submitted through an online form.

The social media company strongly recommends Facebook users add a legacy contact to look after their memorial accounts. Legacy contacts can do things like respond to new friend requests and update pinned posts, but they can’t read private messages or remove or alter previous posts. You can only choose one person, who also has to have a Facebook account.

You can also ask Facebook or Instagram to delete a deceased user’s account if you’re a close family member or an executor. You’ll need to send in documents like a death certificate.

TikTok

The video-sharing platform says that if a user has died, people can submit a request to memorialize the account through the settings menu. Go to the Report a Problem section, then Account and profile, then Manage account, where you can report a deceased user.

Once an account has been memorialized, it will be labeled “Remembering.” No one will be able to log into the account, which prevents anyone from editing the profile or using the account to post new content or send messages.

X

It’s not possible to nominate a legacy contact on Elon Musk’s social media site. But family members or an authorized person can submit a request to deactivate a deceased user’s account.

Passwords

Besides the major online services, you’ll probably have dozens if not hundreds of other digital accounts that your survivors might need to access. You could just write all your login credentials down in a notebook and put it somewhere safe. But making a physical copy presents its own vulnerabilities. What if you lose track of it? What if someone finds it?

Instead, consider a password manager that has an emergency access feature. Password managers are digital vaults that you can use to store all your credentials. Some, like Keeper,Bitwarden and NordPass, allow users to nominate one or more trusted contacts who can access their keys in case of an emergency such as a death.

But there are a few catches: Those contacts also need to use the same password manager and you might have to pay for the service.

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Is there a tech challenge you need help figuring out? Write to us at onetechtip@ap.org with your questions.

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Pediatric group says doctors should regularly screen kids for reading difficulties

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The Canadian Paediatric Society says doctors should regularly screen children for reading difficulties and dyslexia, calling low literacy a “serious public health concern” that can increase the risk of other problems including anxiety, low self-esteem and behavioural issues, with lifelong consequences.

New guidance issued Wednesday says family doctors, nurses, pediatricians and other medical professionals who care for school-aged kids are in a unique position to help struggling readers access educational and specialty supports, noting that identifying problems early couldhelp kids sooner — when it’s more effective — as well as reveal other possible learning or developmental issues.

The 10 recommendations include regular screening for kids aged four to seven, especially if they belong to groups at higher risk of low literacy, including newcomers to Canada, racialized Canadians and Indigenous Peoples. The society says this can be done in a two-to-three-minute office-based assessment.

Other tips encourage doctors to look for conditions often seen among poor readers such as attention-deficit hyperactivity disorder; to advocate for early literacy training for pediatric and family medicine residents; to liaise with schools on behalf of families seeking help; and to push provincial and territorial education ministries to integrate evidence-based phonics instruction into curriculums, starting in kindergarten.

Dr. Scott McLeod, one of the authors and chair of the society’s mental health and developmental disabilities committee, said a key goal is to catch kids who may be falling through the cracks and to better connect families to resources, including quicker targeted help from schools.

“Collaboration in this area is so key because we need to move away from the silos of: everything educational must exist within the educational portfolio,” McLeod said in an interview from Calgary, where he is a developmental pediatrician at Alberta Children’s Hospital.

“Reading, yes, it’s education, but it’s also health because we know that literacy impacts health. So I think that a statement like this opens the window to say: Yes, parents can come to their health-care provider to get advice, get recommendations, hopefully start a collaboration with school teachers.”

McLeod noted that pediatricians already look for signs of low literacy in young children by way of a commonly used tool known as the Rourke Baby Record, which offers a checklist of key topics, such as nutrition and developmental benchmarks, to cover in a well-child appointment.

But he said questions about reading could be “a standing item” in checkups and he hoped the society’s statement to medical professionals who care for children “enhances their confidence in being a strong advocate for the child” while spurring partnerships with others involved in a child’s life such as teachers and psychologists.

The guidance said pediatricians also play a key role in detecting and monitoring conditions that often coexist with difficulty reading such as attention-deficit hyperactivity disorder, but McLeod noted that getting such specific diagnoses typically involves a referral to a specialist, during which time a child continues to struggle.

He also acknowledged that some schools can be slow to act without a specific diagnosis from a specialist, and even then a child may end up on a wait list for school interventions.

“Evidence-based reading instruction shouldn’t have to wait for some of that access to specialized assessments to occur,” he said.

“My hope is that (by) having an existing statement or document written by the Canadian Paediatric Society … we’re able to skip a few steps or have some of the early interventions present,” he said.

McLeod added that obtaining specific assessments from medical specialists is “definitely beneficial and advantageous” to know where a child is at, “but having that sort of clear, thorough assessment shouldn’t be a barrier to intervention starting.”

McLeod said the society was partly spurred to act by 2022’s “Right to Read Inquiry Report” from the Ontario Human Rights Commission, which made 157 recommendations to address inequities related to reading instruction in that province.

He called the new guidelines “a big reminder” to pediatric providers, family doctors, school teachers and psychologists of the importance of literacy.

“Early identification of reading difficulty can truly change the trajectory of a child’s life.”

This report by The Canadian Press was first published Oct. 23, 2024.

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UK regulator approves second Alzheimer’s drug in months but government won’t pay for it

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LONDON (AP) — Britain’s drug regulator approved the Alzheimer’s drug Kisunla on Wednesday, but the government won’t be paying for it after an independent watchdog agency said the treatment isn’t worth the cost to taxpayers.

It is the second Alzheimer’s drug to receive such a mixed reception within months. In August, the U.K. regulator authorized Leqembi while the same watchdog agency issued draft guidance recommending against its purchase for the National Health Service.

In a statement on Wednesday, Britain’s Medicines and Healthcare regulatory Agency said Kisunla “showed some evidence of efficacy in slowing (Alzheimer’s) progression” and approved its use to treat people in the early stages of the brain-robbing disease. Kisunla, also known as donanemab, works by removing a sticky protein from the brain believed to cause Alzheimer’s disease.

Meanwhile, the National Institute for Health and Care Excellence, or NICE, said more evidence was needed to prove Kisunla’s worth — the drug’s maker, Eli Lilly, says a year’s worth of treatment is $32,000. The U.S. Food and Drug Administration authorized Kisunla in July. The roll-out of its competitor drug Leqembi has been slowed in the U.S. by spotty insurance coverage, logistical hurdles and financial worries.

NICE said that the cost of administering Kisunla, which requires regular intravenous infusions and rigorous monitoring for potentially severe side effects including brain swelling or bleeding, “means it cannot currently be considered good value for the taxpayer.”

Experts at NICE said they “recognized the importance of new treatment options” for Alzheimer’s and asked Eli Lilly and the National Health Service “to provide additional information to address areas of uncertainty in the evidence.”

Under Britain’s health care system, most people receive free health care paid for by the government, but they could get Kisunla if they were to pay for it privately.

“People living with dementia and their loved ones will undoubtedly be disappointed by the decision not to fund this new treatment,” said Tara Spires-Jones, director of the Centre for Discovery Brain Sciences at the University of Edinburgh. “The good news that new treatments can slow disease even a small amount is helpful,” she said in a statement, adding that new research would ultimately bring safer and more effective treatments.

Fiona Carragher, chief policy and research officer at the Alzheimer’s Society, said the decision by NICE was “disheartening,” but noted there were about 20 Alzheimer’s drugs being tested in advanced studies, predicting that more drugs would be submitted for approval within years.

“In other diseases like cancer, treatments have become more effective, safer and cheaper over time,” she said. “ We hope to see similar progress in dementia.”

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.

The Canadian Press. All rights reserved.

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