Is your sunscreen to blame for coral bleaching?

Corals are among the most amazing and beautiful and complex living beings. What we see is an exoskeleton made of calcium carbonate that has been formed slowly by the whole colony, made of identical individual polyps. These polyps are marine invertebrates of the phylum Cnidaria; in this phylum, members of the class Anthozoa are the reef builders, but you may be more familiar with other members of the phylum that include the nasty, if beautiful, jellyfishes.

Corals are even more complicated than “just” the colony of tiny polyps making a beautiful exoskeleton that used to end up as beautiful earrings and necklaces (this practice is not heavily regulated).

How do these polyps feed themselves? They may use their tiny mouths to eat some passing plankton or even tinier fish, but their static position limits this source of food. The solution? They incorporate food producers into their own bodies: most of their energy and nutrients is derived from photosynthetic unicellular dinoflagellates that live within the polyps. These photosynthetic organisms are commonly known as zooxanthellae. Corals that depend on photosynthetic organisms for energy are limited to clear waters and water depths that allow enough light reaching the zooxanthellae.

What is coral bleaching?

In some stressful environmental conditions, the polyps in the coral can expel the zooxanthellae. This happens when the temperature increases (or decreases) beyond a certain limit, or there may be a change in nutrient availability of light. A change in temperature is the kind of stress that may make the symbiosis of coral and algae unsustainable. This does not mean that the coral is dead, the polyps are still viable, but will now depend on what food they can obtain from the environment. Also, they can be re-colonized by other zooxanthellae that may be better adapted to the new conditions, or the temperature change may be transitory.

There is no doubt that a gradual increase in sea temperature has first bleached and then killed many corals. Now, however, a new possible cause has been revealed. Not surprisingly, adding an unusual chemical to the environment can damage corals, and this has lead to a new law in Hawaii that bans the use of chemical sunscreens. In one paper, it was shown that adding sunscreen to a container where a piece of coral had been placed lead to bleaching (loss of the algae). This is a crude study, unlikely to represent anything remotely like real life because we don’t apply sunscreen to corals! What we do, if we care enough about our skin health, is apply sunscreen to our skin. If the sunscreen happens to have a chemical sunscreen (not a physical one like zinc oxide) it will be washed into the sea and within minutes it will be broken down by the sunlight. In fact, one of the problems with chemical sunscreens is that they are so unstable under sunlight.

Why do scientists do bad science (because this study of effect of sunscreen on corals is bad science)? Many reasons, and the main one is that scientists are human. One of humans’ bad traits is that we may wish to be famous for the 15 minutes allocated to scary scientific news. I am not going to give a list of these scary (bad science) scientific news because 1) it will lengthen the 15 minutes of fame allocated to the bad scientists and 2) this is the way that bad science is perpetuated. Apparently, we seem to remember false news even better than we remember the true ones.

Another reason may be that false news may help hide the real ones, like the fact that the warming up of the sea, caused by global warming, definitely causes coral bleaching.

And a third one: due to the crazy rules that dictate what is a “charitable” organization in the USA, anybody can start a “not for profit” company in a day or so, and start collecting donations via a website based on any dramatic piece of bad science, especially if the news touches of something as dear to humans like corals.

Here you have the triad: dramatic scientific news (bad science usually), a precious natural treasure like corals and the prospect of making fast money out of people (i.e. the marks).

What can you do about corals? First, don’t panic. We at Skin Actives have always been involved in doing good science, supporting sustainability, protecting the environment and participating in societies that support these aims. That’s what we do.

The skin of men

Why do women spend so much money and time taking care of their skin and men don’t?

Is this because the skin of men and women are so different in anatomy and physiology and biochemistry? No. The difference is in the expectations we have: women rely on their appearance more, while men are judged by society by other parameters.

There are a few differences: men’s skin tends to be thicker. Another: if they wear a beard, it will cover more skin blemishes.
Because they don’t wear makeup, there will be less makeup caused damage to the skin (and eyebrows and eyelashes and hair).

Not all differences are advantages: acne tends to be more devastating for men, and the scars will be even deeper.

What does this all mean? That men should take care of their skin just as women do. They will live just as many years and will need their skin to be comfortable and protect them from changes in ambient temperature, from microbes and from the environment in general.

My suggestions:
1) For young men suffering from acne, gift them our acne kit.
2) Sunscreen! UV is the major cause of skin aging. And don’t forget hats.
3) To repair damage and help with scars: collagen serum
4) To help with dry skin: our ELS serum, with every lipid his skin needs to protect effectively
5) For aging skin: anti-age cream, UV repair cream.
6) To protect from pollution in cities: antioxidant serum. Free radicals, including those formed when UV radiation hits the skin, are a major cause of skin damage and aging.
7) To protect against hair loss: hair care serum. And if they don’t like gray hair, go for Skin Actives gray hair serum.

8) Beard! If he wants a beard, the very best beard care is at Skin Actives!

May is skin cancer awareness month.

What is cancer?

All the cells in our body, and in all multicellular organisms, are regulated in multiple ways to make it possible for the organism to function as a whole. Cell division is a very tightly regulated process, and many genes participate in its regulation.
As we age, our cells divide again and again and, despite all the corrective mechanisms that ensure that there are no major “typing errors” when DNA duplicates, errors occur. These are called mutations.

We can see that our skin cells have mutated in the sun spots that accumulate as we age. This means that the DNA mutations have affected, in one way or another, the complex process of synthesis of melanin and its transfer from melanocytes to skin cells. In itself, this is not a big deal, although some of these pesky sun spots can be ugly, at least for the person who see them in the mirror.

More importantly, these mutations may affect one or more of the genes that regulate very tightly skin division in the skin. Some of these changes may be benign and non invasive, like the ugly skin tags. Other may endanger our lives.

Why is skin cancer so common these days? It has to do with changes in the environment and in social habits. Some chemicals destroy the layer of ozone in the atmosphere (the infamous ozone holes) that prevent some UV from reaching us. Also, people of light skin that used to live far from the equator (that is how the light skin type evolved, so that people in that latitude could make vitamin D) decided to move near the equator and have beach vacations. We also live much longer lives thanks to advances in medicine and agriculture, so our bodies have more time to accumulate DNA mutations. These factors, plus others we may not know about, have increase the incidence of skin cancer. We have to deal with this unhappy situation and that means protecting ourselves better.

Dangerous skin cancers include melanoma and squamous cell carcinoma. Basal cell carcinoma is a somewhat less dangerous type of skin cancer, but all types of skin cancer require treatment and that is when you really need a dermatologist. Dermatologists are experts at spotting skin irregularities that may be signs of trouble, and when in doubt they will do a biopsy. Amazing scientific advances mean that some types of cancer, including melanoma, that used to kill, can now be attacked with sophisticated molecular biological tools, but the sooner you see your MD, the better.

If you want to learn more about what cancer is, you can read “The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee. Beautifully written and researched.

What can Skin Actives do for you

If you want to prevent skin cancer, there are things you can do. You cannot change your genetic makeup (although this may be possible in the future), the result of the lottery that we win and/or lose during conception. But sunscreen is a necessity, especially in some latitudes and some times of the year. Skin Actives also offers (besides sunscreen) antioxidant products that will help you prevent further mutations, so use them. Our UV repair cream can also help.

These days, there are many products that advertise their power to repair DNA. None of them has been proven, so think before you buy them. Using a bad product is not just a waste of money, it is a waste of an opportunity to use an effective one.

What’s so special about Skin Actives products?

For other brands, the most relevant questions are “does it feel good, does it smell good”? But at Skin Actives Scientific we are looking for activity, not just for a pleasant feel that will appeal to your senses. For SAS products the main question is: “does it work?” So far, for every product we make, the answer has been “yes”. Our products are based on good science and we make them very well.

How long do they take to work? The time line is different for different products, because aside from products that aim at increasing skin moisture (like ELS, instant comfort), the others may only show benefits when the skin renews itself, or when hairs finally emerge. For example, the cycling of hair is faster on the scalp than in the eyebrows. Only a small percentage of hairs in the eyebrows are in the anagen stage, the time when a hair is being formed and grows. The rest are essentially “dead”, just hanging there until they fall out. Besides, there is the time that will take from when you apply the eyebrow serum on the area until the cells that make the hair “wake up” and get going and finally that the hair is outside the pore and showing. So don’t give up too soon, you you will be missing on something great!

Copper: both friend and foe

The evidence published in scientific journal shows that, as many other chemicals, vitamins, etc., copper (and copper complexed in a peptide) can be beneficial at very low concentrations and detrimental at higher concentrations. This makes sense: a significant portion of the toxicity of copper comes from its ability to accept and donate single electrons as it changes oxidation state, producing reactive free radical. This same property of copper is used by come enzymes that are crucial to cell metabolism, like superoxide dismutase, tyrosinase and more, and this is why copper is an essential micronutrient.

Enzymes use copper in a carefully orchestrated reaction, free copper is another matter.

With its capacity to generate free radicals, you can see how too much copper can wreck havoc on our body, including our skin. We know that oxidative stress is related to many unpleasant human illnesses, and also with aging. We accumulate copper as we age, and the copper that was badly needed when we were young, by the time we are in our forties it may be damaging our mitochondria, making us ill or at least making us age faster.

Before you buy a face cream that is blue with the pretty color of copper, please remember that copper is all around us, in water and food. Any extra copper may easily take you from “essential micronutrient” concentration to “way too much, this is toxic!”.

You may ask how copper became such ubiquitous ingredient is skin care. The answer is that results from in vitro experiments were extrapolated to real life which no in vivo, long term research to support it. Even worse, copper is marketed to women as an anti-aging active at an age when we already have enough copper accumulated to last for the rest of our lives.
Is there any benefit to copper in skin care? Yes, during healing. But that’s more or less it. It does not make sense to use antioxidants and at the same time supplement the copper we already have in our bodies plus what is ingested in water and food.

Bariatric surgery? Drastic diet? What about your skin?

You decide to go on a diet, trying to shed just a few pounds or a maybe large fraction of your weight. Why do this?
Our bodies evolved to face a natural world with food scarcity and occasional bounty. Our stomachs are large and our bodies can accumulate large amounts of fat that can support us during the lean times, and even to support the growth of a baby to term despite the scarcity of food.

However, if we live in the developed world in the XXI century, there are no times of scarcity. A visit to Costco can supply enough calories to support a small Iron Age village for a couple of months.
What is the result? Unless you have grown up with excellent eating habits and don’t like ice cream or pasta, you may have gained a large amount of fat stored in the body that you will never get to use. In a body that did not evolve to live with so much fat for so long, many health problems will arise: diabetes, high blood pressure, sleep apnea, acid reflux, heart disease and more. Moving around will become harder and the knees will hurt, arthritis may follow.

You and your doctor may decide that, if you want to live a few more years or just increase the quality of your life, you need to shed some or a lot of weight. If you are determined and disciplined, you may achieve enough weight loss to take you back to a healthier body just by eating less and exercising more. In the end, it is a matter of how many calories you ingest as compared to how many you use.

There are many reasons why diet may not be enough to lose the weight you need to lose. And, worse, you may have failed at diets many times, recovering lost weight and even getting some extra back. In the end, you may be one of the many Americans that decide to go for bariatric surgery. This is not an easy way out: it is expensive, recovery from surgery and the changes it produces takes time and in the end, you still have to eat much less. A surgically reduced stomach does not ensure weight loss, it only makes it somewhat easier to eat less calories, because your digestive system will tell you (clearly!) when you must stop eating.
Your skin on a “terribly strict” diet

Your skin is the last thing you will think of when you go for a diet that may cut your calorie intake from more than 2,000 Calories per day to 800 or even less. You will have other worries (“should I eat this or not?”).

Unfortunately, it is not just you who will forget about your skin. Your body will forget about your skin. With so few calories, and usually with low availability of vitamins, your skin will be forgotten in favor of heart, kidneys, etc.

Would you be interested to find out what will happen to your skin in the months that follow this huge change in diet? I think you should be interested, because it has long term implications for your skin, nails and hair.

In the best of times, our skin is not a priority in the distribution of nutrition and vitamins, and the time of scarcity, symptoms of deficiency will be felt. If you were not paying attention, your skin will start claiming attention.

You have to maintain a high level of protein intake during your diet, this is paramount to your overall health. Otherwise you may lose too much of your muscle mass, too much of your bone, etc. But of the protein you ingest, little if anything will reach your skin. What are the consequences? Here is the list: itchy and dry skin, aged appearance, reddish areas and hypopigmentation, follicular hyperkeratosis (excessive accumulation of keratin in hair follicles, resulting in rough and elevated papules), cracking of the corners of your mouth (angular chelitis) and more. Your will also notice brittle, slow growing nails. Your hair will become brittle, dull and thin. You may even notice graying, and your hair will grow very slowly.

What is going on? Your skin is starving. Starving of nutrients, vitamins and minerals; the nutrients missing are amino acids, sugars, fatty acids, essential and otherwise, vitamins, everything. Your skin does not get the wherewithal to do its job

What to do?
For your skin: dream cream, collagen serum. ELS (every lipid serum) is vital!
For your hair: Skin Actives hair serum
For your eyebrows and eyelashes: eye brows and eye lashes serum
For your nails: nails serum duo.

This is exciting: science works!

Maybe I should have written the title in ALL CAPS! It should be obvious but it is nice to show you pictures of eyelashes growing and of what were before empty areas of scalp, now regrowing hair.

I had a medical procedure last year that ended with me losing  a lot of hair, adding to the misery of months of recovery, but our SAS hair serum worked and I am now back to my usual hair.

So go and get our KGF containing products, they work. As for me, it is nice to do the right thing and succeed, and helping people on the way. And it is nice to have my hair back!

Rosacea update 2018

Rosacea update 2018

New scientific evidence has shown that rosacea’s diverse features may be part of a progression of inflammation, which initially may not be visible to the naked eye but can be detected by looking at the changes in the anatomy, physiology and biochemistry of the skin. It starts with the common presentations of flushing and then stable face redness, and then it may progress to include papules and pustules, and potentially lead to development of external nodules and swellings called phymas.

Research on rosacea has intensified over the last 15 years and it suggests that there will be no simple answers. It seems that, underlying rosacea there is a complex system of disease-causing pathways that include defects in the immune system. Scientific progress in the elucidation of the mechanisms underlying rosacea will continue, but for the time being (and in the near future) there are no easy solutions and rosacea can only be controlled, and not “cured”.

What can you do for yourself?
I know this answer can be annoying for the sufferer of any chronic condition: try to avoid the triggers. The triggers for rosacea are various and changing with time for each person, and many are unavoidable during daily life. Try to avoid hot, crowded spaces, especially if there is cigarette smoke.

What can Skin Actives do for you?
Taking into account the complex causes of rosacea, you can try the following products that address one or more of the factors know to affect rosacea. We hope one or more of these products will help you.

1) Ameliorate inflammation using our Olive Anti-Inflammatory Cream.
2) control redox stress by using our Antioxidant Serum or Antioxidant Cream
3) use our Redness Reduction Serum (rosacea control serum) containing epidermal growth factor
4) see if our Anti-Aging HydraMist (celestite spritz) helps prevent flushing as a response to heat or smoke stress
5) ELS, our “every lipid serum” will help with skin dryness and accelerate recovery

Gallo, Richard L., Granstein, Richard D., Kang, Sewon, Mannis, Mark, Steinhoff, Martin, (Tan, Jerry, Thiboutot, Diane. (2018) Standard classification and pathophysiology of rosacea: The 2017 update by the National Rosacea Society Expert Committee. J. American Acad. Dermatology, 78: 148-155

Holmes, Anna D., Spoendlin, Julia, Chien, Anna L., Baldwin, Hilary, Chang, Anne Lynn S. (2018) Evidence-based update on rosacea comorbidities and their common physiologic pathways J. American Acad. Dermatology, 78: 156-166

From real to fake to faux to man-made to ecological to vegan

Your vegan hand bag is made of plastic. What is the plastic used to make your “vegan leather” handbag?

From Wikipedia: “Plastics are typically organic polymers of high molecular mass and often contain other substances. They are usually synthetic, most commonly derived from petrochemicals, however, an array of variants are made from renewable materials…”

Plastic is used to replace leather as an inexpensive alternative. What is remarkable is the changes in nomenclature used to sell it. Maybe in the past buying fake leather may have made you feel “cheap”. But buying vegan leather may make you feel virtuous, and you may be willing to pay more for vegan than for fake,

Be aware that the same advertising techniques are used in advertising for skin care products, except that lying is easier. Why is that? Trying to sell you plastic as leather would be illegal. But selling you “naturally derived” synthetic ingredients is not going to break the law, because “naturally derived” means nothing.

Don’t buy products containing preservatives consisting of “grapefruit seed extract”. Grapefruit seed has not enough antimicrobial chemicals to make it an effective preservative, so somebody is lying to you. Maybe the grapefruit seed paste was used as raw material to synthesize chemicals that have antimicrobial power (grapefruit seeds don’t), or maybe the real extract has been adulterated. Scientific studies found that when something sold as “grapefruit seed extract” had antimicrobial effect, it  contained benzethonium chloride, or other synthetic preservatives (other commercially available products contained triclosan, benzalkonium chloride or methyl paraben). If it didn’t, it had no preservative activity.

There are many roles for plastics and for all kinds of synthetic chemicals and I have no objection to them. But I do object to selling plastic as vegan leather or synthetic ingredients as “naturally derived”. Everything on earth is naturally derived, by definition, even if the chemical at the end is unrecognizable. I don’t like it when advertising tries to fool me. There are no white lies in advertising.

Are you an apple or a human?

If you can read this, you are probably a human.

Next question. What is a stem cell? “It is a an undifferentiated cell of a multicellular organism that is capable of giving rise to indefinitely more cells of the same type, and from which certain other kinds of cell arise by differentiation.”

We have stem cells in our skin that will be able to heal your skin if the part of your skin in charge of renewal (stratum basale) gets damaged. Your stem cells have your DNA. If you have been careful (wear sunscreen!) your steam cells’ DNA is intact and non-mutated.

What are apple stem cells? Just like your own (undifferentiated cells of a multicellular…”) but with the DNA of an apple. They would not benefit an apple either, except for the amino acids, sugars, etc. that they probably contained when they were prepared.

Can you replace your stem cells with somebody other people’s stem cells? No, your body will see those cells as foreign and will battle them.

What can apple stem cells do for you? Nothing, but you are welcome to eat apples, they taste good and contain stem cells. Applying apple stem cells to your skin will do a bit less for you, because those in cosmetics have been dead for month, or, most likely, for years.

On the other hand, I prefer apple stem cells to those from the wrong tissue (see below).

From the NYT
Patients Lose Sight After Stem Cells Are Injected Into Their Eyes

Three women suffered severe, permanent eye damage after stem cells were injected into their eyes, in an unproven treatment at a loosely regulated clinic in Florida, doctors reported in an article published Wednesday in The New England Journal of Medicine.
One, 72, went completely blind from the injections, and the others, 78 and 88, lost much of their eyesight. Before the procedure, all had some visual impairment but could see well enough to drive.
The cases expose gaps in the ability of government health agencies to protect consumers from unproven treatments offered by entrepreneurs who promote the supposed healing power of stem cells.

The women had macular degeneration, an eye disease that causes vision loss, and they paid $5,000 each to receive stem-cell injections in 2015 at a private clinic in Sunrise, Fla. The clinic was part of a company then called Bioheart, now called U.S. Stem Cell. Staff members there used liposuction to suck fat out of the women’s bellies, and then extracted stem cells from the fat to inject into the women’s eyes.

The disastrous results were described in detail in the journal article, by doctors who were not connected to U.S. Stem Cell and treated the patients within days of the injections. An accompanying article by scientists from the Food and Drug Administration warned that stem cells from fat “are being used in practice on the basis of minimal clinical evidence of safety or efficacy, sometimes with the claims that they constitute revolutionary treatments for various conditions.”

Kristin C. Comella, the chief science officer of U.S. Stem Cell, said in an interview that the clinic did not need F.D.A. approval because it was treating patients with their own cells, which are not a drug. She said the stem-cell treatments were comparable to patients’ receiving grafts of their own skin — a procedure not a drug.

Two of the eye patients sued the clinic and settled, but it has faced no other penalties. Ms. Comella said it no longer treats eyes, but continues to treat five to 20 patients a week for other problems like torn knee cartilage and degenerating spinal discs.

All three women found U.S. Stem Cell because it had listed a study on a government website, — provided by the National Institutes of Health. Two later told doctors they thought they were participating in government-approved research. But no study ever took place, and the proposed study on the site had no government endorsement. Clinical trials do not need government approval to be listed on the website.

Legitimate research rarely, if ever, charges patients to participate, scientists say, so the fees should have been a red flag. But many people do not know that.

Promising stem-cell research in eye disease and other conditions is taking place. But researchers and health officials have been warning for years that patients are at risk from hundreds of private clinics that have sprung up around the United States and overseas, offering stem-cell treatments for all manner of ailments, like injured knees, damaged spinal discs, neurological diseases and heart failure. Businesses promising “regenerative medicine” have multiplied, with little or no regulation.

Stem cells, which can develop into many different types of cells, are thought to have tremendous potential to repair or replace tissue damaged by disease, injury or aging. But so far, the F.D.A. has approved only a few stem-cell products to treat certain blood disorders.

The women in Florida suffered detached retinas, in which the thin layer of light-sensing cells that send signals to the optic nerve pulls away from the back of the eye — a condition that usually needs prompt surgery to prevent blindness. Doctors who examined the patients said they suspected that the stem cells had grown onto the retina and then contracted, pulling it off the eyeball.

One woman had such high pressure inside her eyes — about three times the normal level — that it may have damaged her optic nerves. Doctors operated quickly to relieve the pressure, but she became blind.

“The really horrible thing about this is that you would never, nobody practicing good medicine would ever do an experimental procedure on a patient on both eyes on the same day,” said Dr. Thomas A. Albini, an author of the article who saw two of the patients, at the Bascom Palmer Eye Institute at the University of Miami Miller School of Medicine.

Standard practice, he said, is to treat one eye at a time, usually the worse eye first, so that if something goes wrong at least the patient still has one eye left with some vision.

Dr. Albini said his team alerted the F.D.A. after the second patient showed up.
“They did send an investigator who took statements from us,” he said. “They apparently wrote up a report, which as far as I know is still not finished or available for public consumption.”

Andrea Fischer, a spokeswoman for the F.D.A. said the agency could not comment on whether an investigation had been conducted.

Two of the women were not available for interviews because their lawsuit settlements in 2016 included nondisclosure agreements, according to their lawyer, Andrew B. Yaffa, of Coral Gables, Fla. He also was barred from discussing the case, but a publicly available complaint he filed in July 2016 details one patient’s story, and states that the injections were performed by a nurse practitioner who was introduced as a physician.

The third patient did not sue, but did not respond to a request for an interview made through her doctor. (The patients were not named in the journal article.)

Ms. Comella, from U.S. Stem Cell, said that an independent review board had approved the proposed eye study, including the plan to treat both eyes at once. She said a total of three patients ever received eye injections at the clinic, and were not part of a trial. She declined to confirm that they were the same three patients described in the journal article, but the article links the women to the clinic.

Stem cells from fat tissue. Staff members at U.S. Stem Cell used liposuction to take fat out of three women’s bellies, and then extracted stem cells from the fat to inject into the women’s eyes. Credit Riccardo Cassiani-Ingoni/Science Source

Ms. Comella said a trial never did begin, because the first three cases “ended the way they ended, so we decided not to go forward with any additional patients.”

She declined to discuss the cases further, citing the nondisclosure agreement. But she said that U.S. Stem Cell had successfully treated thousands of patients for other conditions, and that it was misleading to draw attention to “a handful of adverse events.”
U.S. Stem Cell also makes money by training doctors to extract stem cells from fat. And in a blog post on Tuesday its chief executive, Mike Tomás, said the company expected to open clinics throughout the Middle East, in Kuwait, Dubai and Qatar.

But the company, which is a penny stock, is struggling financially, and as recently as last fall warned investors that its poor financial situation put it at risk of going out of business.

Clinics like U.S. Stem Cell that extract stem cells from fat fall into a gray zone. Regulations say stem cells do not have to be F.D.A. approved if they are the patient’s own and are “minimally manipulated” — but some clinics may stretch that term to suit their own purposes.

The F.D.A. website has a page that warns “the hope that patients have for cures not yet available may leave them vulnerable to unscrupulous providers of stem-cell treatments that are illegal and potentially harmful.”

The F.D.A. article in The New England Journal of Medicine suggested that adverse events from stem-cell treatments “are probably much more common than is appreciated, because there is no reporting requirement when these therapies are administered outside clinical investigations.”

Like the Florida patients, people who consult may assume that the studies listed there have been approved by the F.D.A. or the National Institutes of Health, but that is not necessarily the case, Renate Myles, an N.I.H. spokeswoman, said.
In an email, Ms. Myles said, “The information on is provided by the study sponsor or principal investigator and posting on does not necessarily reflect endorsement by the N.I.H. does not independently verify the scientific validity or relevance of the trial itself beyond a limited quality control review.”

Ms. Myles said that the site urges patients to consult their own doctors about joining studies and includes caveats in multiple places.
“However, we agree that such caveats need to be clearer to all users and will be adding a more prominent disclaimer in the near future,” she added.