Getty Images
This news release describes how researchers are adapting a test they developed for rapid diagnosis of prion diseases to earlier detection of Parkinson’s disease and dementia with Lewy bodies. The news release gives data from the results, which appeared in a published study, and explains how a more rapid test could help identify patients for clinical trials. However, it doesn’t talk about the impact of early detection of these devastating diseases on patients or give a good sense of the test’s potential availability. Also, it doesn’t mention that four of the authors have applied for a patent on the related technology.
Quicker, cheaper detection of neurological diseases might be good for individual patients, or it might not. News releases about such advances will be read by patients and their families and should strive to discuss the impact of early diagnosis, beyond the potential benefits for research. That might include prompter treatment of symptoms or unnecessary anxiety, for example.
Readers should be aware that since the test is still under development; earlier detection from such a test isn’t going to be available to individual patients any time soon.
There’s no mention of the cost. The study itself says having quicker results “markedly enhances the cost effectiveness and practicality” of these tests.
The release says the test “correctly excluded all the 31 controls and diagnosed both Parkinson’s disease and dementia with Lewy bodies with 93 percent accuracy.” The author also noted the number of people tested.
There’s no discussion of how patients might be affected by earlier diagnosis. For example, do patients want to know whether they have one of these incurable diseases?
According to the study, “the earlier the diagnosis, the earlier that any appropriately targeted therapies can be initiated before further tissue damage is done.” But the news release doesn’t explore that potential benefit.
Also, a 93 percent accuracy rate means 7 percent of patients will get a false result. According to the study, the test correctly identified those without the disease in all cases, which means the disease was not detected in some patients, which could give them a false assurance.
The release doesn’t assess potential harms of taking spinal fluid samples, which though generally considered safe it is still an invasive test and can result in headache, back pain, bleeding, and increased skull pressure. The release states that researchers are attempting to come up with better tests for neurological diseases “using the least invasive patient sample possible — whether that is blood, skin, nasal brushings, or other samples.”
The release gives specific information on the scope of the study, including that researchers “tested 60 cerebral spinal fluid samples, including 12 from people with Parkinson’s disease, 17 from people with dementia with Lewy bodies, and 31 controls, including 16 of whom had Alzheimer’s disease.”
However, it doesn’t mention some limitations, such as very small number of patient volunteers and the researchers’ observations that factors such as sample volume and temperature “strongly influenced the performance of the assay.” The researchers say further testing will be necessary to understand some of the specific detection abilities of the test, including when they’re used in clinical settings.
If the test is to be used in clinical trials, standardization across sites will have to be assured — both where samples are collected and where the assay is done.
There’s no evidence of disease-mongering. The release says Parkinson’s disease affects “up to 1 million people in the United States, with 60,000 new cases diagnosed each year. Lewy body dementia affects an estimated 1.4 million people in the United States, according to the Lewy Body Dementia Association.”
The news release mentions that the research was supported by the NIH but doesn’t mention other significant funders such as the Parkinson’s and Movement Disorder Foundation and the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California San Diego.
It also doesn’t note (as the published article does) that four study authors have applied for a US provisional patent application on the technology.
The news release says “test results were available within two days, compared to related assays that require up to 13 days.”
However, it doesn’t say how the faster test compares in terms of accuracy. The study says early detection is helpful in part because “the accuracy of diagnoses based on other clinical indices is poorest in the earlier phases of disease.”
The tentative wording of the lead — that the test could “offer the possibility of improving early diagnosis” — raises the question of what needs to happen for this test to become widely available. The release doesn’t answer that question.
Nor does the study discuss improved diagnosis since that’s not the intent of the test’s development — it’s research to determine who to include in trials and follow their disease progression.
The release does a good job here, stating:
Early and accurate diagnoses of these brain disorders is essential for developing treatments and identifying patients eligible for clinical trials. The diseases typically progress for years before symptoms appear, and once they do, distinguishing one disease from another can be difficult.
There’s no unjustifiable language.
Systematic, Criteria-Driven
Following a shift in journalism’s business model, a diverse ecosystem of publications, many covering science, has sprung up online. This has made it more difficult to sort out what qualifies as journalism, what doesn’t, and whether the public even cares.
https://t.co/qO2a27FiSe
Researchers and journalists do the public a grave disservice when they spin health study results to make them appear safer or more effective than warranted, says @HealthNewsRevu founder @garyschwitzer https://t.co/QIKsRbP6Ed
Comments
Please note, comments are no longer published through this website. All previously made comments are still archived and available for viewing through select posts.
Our Comments Policy
But before leaving a comment, please review these notes about our policy.
You are responsible for any comments you leave on this site.
This site is primarily a forum for discussion about the quality (or lack thereof) in journalism or other media messages (advertising, marketing, public relations, medical journals, etc.) It is not intended to be a forum for definitive discussions about medicine or science.
We will delete comments that include personal attacks, unfounded allegations, unverified claims, product pitches, profanity or any from anyone who does not list a full name and a functioning email address. We will also end any thread of repetitive comments. We don”t give medical advice so we won”t respond to questions asking for it.
We don”t have sufficient staffing to contact each commenter who left such a message. If you have a question about why your comment was edited or removed, you can email us at feedback@healthnewsreview.org.
There has been a recent burst of attention to troubles with many comments left on science and science news/communication websites. Read “Online science comments: trolls, trash and treasure.”
The authors of the Retraction Watch comments policy urge commenters:
We”re also concerned about anonymous comments. We ask that all commenters leave their full name and provide an actual email address in case we feel we need to contact them. We may delete any comment left by someone who does not leave their name and a legitimate email address.
And, as noted, product pitches of any sort – pushing treatments, tests, products, procedures, physicians, medical centers, books, websites – are likely to be deleted. We don”t accept advertising on this site and are not going to give it away free.
The ability to leave comments expires after a certain period of time. So you may find that you’re unable to leave a comment on an article that is more than a few months old.
You might also like