A new Long Covid task is making data on clinical trials more available to others who can’t participate in studies, while gaps appear in the existing search for meaningful treatments. Patient-student Ezra Spier developed the new task, called Long Covid Studies. Its March 26 launch includes the highlights of about 550 trials conducted in the U. S. In the U. S. , and 54 other countries.
“Clinical trials are the currency of studies that allow you to do things. Trials help build consensus in medicine,” Spier said. He encouraged expanding studies of Long Covid after participating in a Long Covid trial at Stanford University and seeing discussions from other people with Long Covid. who was seeking more information about new trials, he told The Sick Times.
To create the new website, Spier used knowledge from ClinicalTrials. gov, a knowledge base maintained through the National Institutes of Health (NIH) that lists U. S. -registered trials. In the U. S. and around the world. Researchers who wish to submit their products for approval through the Department of Food and Agriculture Commission
While ClinicalTrials. gov offers a comprehensive list of ongoing trials, it’s “designed for regulators and researchers” who know how those trials work, Spier said. He explained that many other people with long Covid would possibly not know how to navigate the. . . since most people have no biomedical experience and probably have little time and ability to get to know your infrastructure.
To create a more available site, Spier designed Long Covid Studies to highlight the main points of clinical trials that are most important to those interested in participating, such as where a study is taking place and the treatments being tested. The studies are recruited in a user’s country, based on their IP address, he explained. But users can also use filters to locate other types of essays.
Long Covid studies are a wonderful tool to “make it easier for other people [with Long Covid] to consume data and participate in clinical trials,” said David Putrino, who runs a Long Covid clinic and trials at Mount Sinai Health System in New York City. The city of York. Il has stated that ClinicalTrials. gov is not widely available to patients; For example, it takes several steps to locate tactile data for researchers who are conducting trials that are of interest to a user, he said.
“The clinical trial landscape is so opaque for many patients that it’s hard to know what to stick to,” said patient advocate Charlie McCone. Long Covid studies can demystify this picture, especially for those who are not yet attached to social media. The media is looking closely, he said.
During the progression of the new site, Spier also spent time analyzing the ClinicalTrials. gov database to better perceive the existing Long Covid testing landscape. Their studies found that while there are more than a hundred trials classified as recruiting patients for interventional studies as of March 2024, many of those studies do not test new drugs or follow rigorous study practices that scientists and doctors need to prove the efficacy of a treatment.
Clinical trials for Long Covid and related chronic diseases are progressing slowly, Karyn Bishof, founder of the Covid-19 Longhauler Advocacy Project, said in an email after reviewing Spier’s analysis. Because of this, “I think we’re in a very bad scenario when it comes to finding remedies or a cure in the near future,” he said.
While the ClinicalTrials. gov database is designed for clinical trials, which check to see if a potential remedy is helping patients with a specific disease, the site also lists studies that simply involve observing patients and collecting data, known as observational studies. These observational studies may indicate upcoming clinical trials, but they are less useful in demonstrating the efficacy of a remedy.
Spier’s research includes 485 indexed trials for long Covid disease, as of mid-March. It does not include other trials in the broader category of “post-Covid conditions” that are less applicable to other people with long Covid. , 191 are observational studies and 294 are actual clinical trials, called interventional studies. Of those 294 trials, 108 are enrolling patients lately.
The number of trials testing drugs is higher today than it was in August 2023, when The Lancet Infectious Diseases published an editorial calling attention to the slow progress in long Covid trials. At the time, out of 94 interventional trials of ClinicalTrials. gov, only 12 pharmaceutical remedies were being tested. As of March 2024, existing searches included more than a hundred studies involving pharmaceutical remedies, though Spier cautions that his research doubles trials that add drugs.
It’s “encouraging to see that the overall numbers are higher than the last time I checked,” Ursula Hofer, of the August 2023 editorial, said in an email. But Hofer still noted “some of the same gaps” in the research, and added many observations. studies and that “many interventional trials are only supportive (e. g. e. g. , coping) or focus on lifestyle factors, which I don’t think will lead to a really extensive impact. Improvement in the maximum number of participants. “
Putrino also noted that the indexed trials are heavily skewed toward behavioral interventions, which check symptom control methods such as stimulation and cognitive education rather than medication. According to Spier’s analysis, existing studies include about 100 behavioral interventions (some of which can be reviewed in the same trials as for medications).
Some of those behavioral methods can be very helpful for patients, Putrino said. However, those methods are unlikely to “produce greater effects after a $5 million clinical trial,” as such a trial would only reaffirm what other people with long Covid already know. your private experience. I would prefer that research institutes dedicate budget to the progression of new drugs and the repurposing of drugs from other situations for Long Covid.
Spier searched for common keywords in the descriptions of the interventions the researchers tested and found that “training” and “training” were among the most popular terms used. Exercise trials, in particular, represented a large use of the investment because large studies have shown that exercise can worsen symptoms for many other people with long Covid and similar illnesses, such as myalgic encephalomyelitis (MS), said Stephen Smith, who follows the clinical trials at Twitter/X Post-Viral Trials News.
“There’s a time and a position for training tryouts, and I think almost none of them are appropriate,” Smith said. Trying exercise as a remedy for others with debilitating bureaucracy of Long Covid is like trying smoking as a remedy for lung disease, he said. saying.
Smith also expressed fears that many of the Long Covid trials indexed in ClinicalTrials. gov are non-blinded, meaning that those involved in the studies will know which participants in a trial are receiving remedy and which are receiving placebos. Scientists see blinding as a vital factor. It is a facet of rigorous clinical trials because it reduces the threat to patients and researchers of a drug when it has limited impact.
Of the interventional Long Covid trials, 113 are unblinded and 55 have only one point of blinding, meaning patients possibly don’t know whether they are receiving a drug or a placebo, but researchers still know and would possibly skew the effects. Fields like Long Covid and ME “have massive biases, they need their drug or treatment to work,” Smith said. He cautioned that without double-blind or higher, the effects of the tests would likely be unreliable.
As with Long Covid health care options, clinical trials tend to cluster in urban spaces where giant study centers are located, according to Spier’s analysis. For example, there are 15 trials clustered in Southern California and none in more rural states like Idaho. and Wyoming. Trials are also much less unusual in the U. S. in the U. S. and Europe than in other countries; most likely, those insights are skewed because ClinicalTrials. gov is a U. S. registry. U. S.
“I’m not surprised to see a significant lack of clinical trials in rural areas,” Bishof said. “This is a factor highlighted by many other people in our network when it comes to seeking and getting care for acute Covid and long Covid. “”.
Scientists and patient advocates agree that more investment is needed to push Long Covid studies forward and that the budget needs to be spent wisely, on more promising remedies than behavioral interventions. Advocacy teams such as the Long Covid Moonshot and the Long Covid Action Project are focusing on studying investment as a key demand of the federal government.
“My dream situation would be to see large-scale trials on platforms like the ones we did for acute Covid-19 treatment for long Covid; the gradual approach that has lately prevailed with relatively many small trials seeking supportive and lifestyle care. it wastes resources,” Hofer said.
Hofer advised that other people with long Covid be involved in the design and planning of the trials, to ensure that the studies prioritize the most promising treatments and for patients to trust the studies. Bishof agreed, writing: “Every clinical trial deserves to be associated with long Covid. organization of patients and ensure their involvement at each and every level of the project. “
Echoing that recommendation, Spier, who also collaborates with the Patient-Led Research Collaborative, hopes to one day upload a feature to the Long Covid Studies site that highlights studies that have patient representatives. If you’re contemplating enrolling in a study, you’d locate It’s vital “to know that someone like me was involved” in the design of the research, he said.
Patient representatives can also advise researchers on how to make it less difficult for others with long Covid to participate in studies, especially those with cognitive symptoms. For example, Putrino and his colleagues at Mount Sinai put a lot of resources into “hands-on. “-in communication” with trial participants there, providing other people with other features to remind them about the study (phone calls, texts, emails) and making sure they understood all the elements of a trial.
Spier has other plans to expand Long Covid studies beyond the knowledge that can be gained in ClinicalTrials. gov, such as adding more main points about the interventions being tested, simplifying the procedure for potential exam participants to contact researchers, and creating a panel that presents insights such as the statistics in this story, Real-time updates. He welcomes feedback from patients and researchers, he said.
People with long Covid need to see more, bigger, smarter clinical trials, Attorney McCone said. Researchers can simply advance those trials by engaging with patients, he suggested: Long Covid studies are “an example of how a patient can step in to help. “” to deal with demanding situations in this space.
by Betsy Ladyzhets, The Sick Times, Source New Mexico, March 29, 2024
A new Long Covid task is making data on clinical trials more available to others who can’t participate in studies, while gaps appear in the existing search for meaningful treatments. Patient-student Ezra Spier developed the new task, called Long Covid Studies. Its March 26 launch includes the highlights of about 550 trials conducted in the U. S. In the U. S. , and 54 other countries.
“Clinical trials are the currency of studies that allow you to do things. Trials help build consensus in medicine,” Spier said. He encouraged expanding studies of Long Covid after participating in a Long Covid trial at Stanford University and seeing discussions from other people with Long Covid. who was seeking more information about new trials, he told The Sick Times.
To create the new website, Spier used knowledge from ClinicalTrials. gov, a knowledge base maintained through the National Institutes of Health (NIH) that lists U. S. -registered trials. In the U. S. and around the world. Researchers interested in submitting their products for approval to the Food Commission and Wildlife Commission
While ClinicalTrials. gov offers a comprehensive list of ongoing trials, it’s “designed for regulators and researchers” who know how those trials work, Spier said. He explained that many other people with Long Covid would possibly not know how to navigate the. . . since most people have no biomedical experience and probably have little time and ability to get to know your infrastructure.
To create a more available site, Spier designed Long Covid Studies to highlight the main points of clinical trials that are most important to those interested in participating, such as where a study is taking place and the treatments being tested. The studies are recruited in a user’s country, based on their IP address, he explained. But users can also use filters to locate other types of essays.
Long Covid studies are a wonderful tool to “make it easier for other people [with Long Covid] to consume data and participate in clinical trials,” said David Putrino, who runs a Long Covid clinic and trials at Mount Sinai Health System in New York City. The city of York. Il has stated that ClinicalTrials. gov is not widely available to patients; For example, it takes several steps to locate tactile data for researchers who are conducting trials that are of interest to a user, he said.
“The clinical trial landscape is so opaque for many patients that it’s hard to know what to stick to,” said patient advocate Charlie McCone. Long Covid studies can demystify this picture, especially for those who are not yet attached to social media. The media is looking closely, he said.
During the progression of the new site, Spier also spent time analyzing the ClinicalTrials. gov database to better perceive the existing Long Covid testing landscape. Their studies found that while there are more than a hundred trials classified as recruiting patients for interventional studies as of March 2024, many of those studies do not test new drugs or follow rigorous study practices that scientists and doctors need to prove the efficacy of a treatment.
Clinical trials for Long Covid and related chronic diseases are progressing slowly, Karyn Bishof, founder of the Covid-19 Longhauler Advocacy Project, said in an email after reviewing Spier’s analysis. Because of this, “I think we’re in a very bad scenario when it comes to finding remedies or a cure in the near future,” he said.
While the ClinicalTrials. gov database is designed for clinical trials, which check to see if a potential remedy is helping patients with a specific disease, the site also lists studies that simply involve observing patients and collecting data, known as observational studies. These observational studies may indicate upcoming clinical trials, but they are less useful in demonstrating the efficacy of a remedy.
Spier’s research includes 485 indexed trials for long Covid disease, as of mid-March. It does not include other trials in the broader category of “post-Covid conditions” that are less applicable to other people with long Covid. , 191 are observational studies and 294 are actual clinical trials, called interventional studies. Of those 294 trials, 108 are enrolling patients lately.
The number of trials testing drugs is higher today than it was in August 2023, when The Lancet Infectious Diseases published an editorial calling attention to the slow progress in long Covid trials. At the time, out of 94 interventional trials of ClinicalTrials. gov, only 12 pharmaceutical remedies were being tested. As of March 2024, existing searches included more than a hundred studies involving pharmaceutical remedies, though Spier cautions that his research doubles trials that add drugs.
It’s “encouraging to see that the overall numbers are higher than the last time I checked,” Ursula Hofer, of the August 2023 editorial, said in an email. But Hofer still noted “some of the same gaps” in the research, and added many observations. studies and that “many interventional trials are only supportive (e. g. e. g. , coping) or focus on lifestyle factors, which I don’t think will lead to a really extensive impact. Improvement in the maximum number of participants. “
Putrino also noted that the indexed trials are heavily skewed toward behavioral interventions, which check symptom control methods such as stimulation and cognitive education rather than medication. According to Spier’s analysis, existing studies include about 100 behavioral interventions (some of which can be reviewed in the same trials as for medications).
Some of those behavioral methods can be very helpful for patients, Putrino said. However, those methods are unlikely to “produce greater effects after a $5 million clinical trial,” as such a trial would only reaffirm what other people with long Covid already know. your private experience. I would prefer that research institutes dedicate budget to the progression of new drugs and the repurposing of drugs from other situations for Long Covid.
Spier searched for common keywords in the descriptions of the interventions the researchers tested and found that “workout” and “exercise” were among the most popular terms used. Exercise trials, in particular, represented a large use of the investment because large studies have shown that exercise can worsen symptoms for many other people with long Covid and similar illnesses, such as myalgic encephalomyelitis (MS), said Stephen Smith, who follows the clinical trials at Twitter/X Post-Viral Trials News.
“There’s a time and a position for training tryouts, and I think almost none of them are appropriate,” Smith said. Trying exercise as a remedy for others with debilitating bureaucracy of Long Covid is like trying smoking as a remedy for lung disease, he said. saying.
Smith also expressed fears that many of the Long Covid trials indexed in ClinicalTrials. gov are non-blinded, meaning that those involved in the studies will know which participants in a trial are receiving remedy and which are receiving placebos. Scientists see blinding as a vital factor. It is a facet of rigorous clinical trials because it reduces the threat to patients and researchers of a drug when it has limited impact.
Of the interventional Long Covid trials, 113 are unblinded and 55 have only one point of blinding, meaning patients possibly don’t know whether they are receiving a drug or a placebo, but researchers still know and would possibly skew the effects. Fields like Long Covid and ME “have massive biases, they need their drug or treatment to work,” Smith said. He cautioned that without double-blind or higher, the effects of the tests would likely be unreliable.
As with Long Covid health care options, clinical trials tend to cluster in urban spaces where giant study centers are located, according to Spier’s analysis. For example, there are 15 trials clustered in Southern California and none in more rural states like Idaho. and Wyoming. Trials are also much less unusual in the U. S. in the U. S. and Europe than in other countries; most likely, those insights are skewed because ClinicalTrials. gov is a U. S. registry. U. S.
“I’m not surprised to see a significant lack of clinical trials in rural areas,” Bishof said. “This is a factor highlighted by many other people in our network when it comes to seeking and getting care for acute Covid and long Covid. “”.
Scientists and patient advocates agree that more investment is needed to push Long Covid studies forward and that the budget needs to be spent wisely, on more promising remedies than behavioral interventions. Advocacy teams such as the Long Covid Moonshot and the Long Covid Action Project are focusing on studying investment as a key demand of the federal government.
“My dream situation would be to see large-scale trials on platforms like the ones we did for acute Covid-19 treatment for long Covid; the gradual approach that has lately prevailed with relatively many small trials seeking supportive and lifestyle care. it wastes resources,” Hofer said.
Hofer advised that other people with long Covid be involved in the design and planning of the trials, to ensure that the studies prioritize the most promising treatments and for patients to trust the studies. Bishof agreed, writing: “Every clinical trial deserves to be associated with long Covid. organization of patients and ensure their involvement at each and every level of the project. “
Echoing that recommendation, Spier, who also collaborates with the Patient-Led Research Collaborative, hopes to one day upload a feature to the Long Covid Studies site that highlights studies that have patient representatives. If you’re contemplating enrolling in a study, you’d locate It’s vital “to know that someone like me was involved” in the design of the research, he said.
Patient representatives can also advise researchers on how to make it less difficult for others with long Covid to participate in studies, especially those with cognitive symptoms. For example, Putrino and his colleagues at Mount Sinai put a lot of resources into “hands-on. “-in communication” with trial participants there, providing other people with other features to remind them about the study (phone calls, texts, emails) and making sure they understood all the elements of a trial.
Spier has other plans to expand Long Covid studies beyond the knowledge that can be gained in ClinicalTrials. gov, such as adding more main points about the interventions being tested, simplifying the procedure for potential exam participants to contact researchers, and creating a panel that presents insights such as the statistics in this story, Real-time updates. He welcomes feedback from patients and researchers, he said.
People with long Covid need to see more, bigger, smarter clinical trials, Attorney McCone said. Researchers can simply advance those trials by engaging with patients, he suggested: Long Covid studies are “an example of how a patient can step in to help. “”Dealing with demanding situations in this space.
Source New Mexico is owned by States Newsroom, a grant-funded, nonprofit news network and donor coalition as a 501c(3) public charity. Source New Mexico maintains its editorial independence. Please contact editor Shaun Griswold if you have any questions: info@sourcenm. com. Follow Source New Mexico on Facebook and Twitter.
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