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Cancer, Events, In the News, Patient Care, Stanford News

A neurosurgeon’s journey from doctor to cancer patient

A neurosurgeon's journey from doctor to cancer patient

image.img.320.highEarlier this week, I had the chance to hear Stanford neurosurgeon Paul Kalanithi, MD, discuss living with advanced-stage lung cancer in a conversation with palliative care specialist Timothy Quill, MD. The idea for the night’s event, which was held on the Stanford medical school campus, was to provide a good example of how the doctor-patient relationship can help improve quality of life for the very sick. On stage before a packed audience, Kalanithi, prodded by Quill’s gentle but pointed questions, told the story of how serious illness changed his life. As I wrote in an online story posted yesterday:

“Are there things in particular that you worry about now?,” asked Quill… a professor of psychiatry and medical humanities at the University of Rochester School of Medicine and an expert in end-of-life decision making. “Not really,” [Kalanithi] said. “I am sad at not seeing my daughter grow up, at probably not being here long enough for her to have a memory of me. I try to worry about things that are actually changeable. I worry about getting my book finished. I’d like to have that done for my daughter to know me.”

What surprised Kalanithi most about his life after being diagnosed with lung cancer was just how hard it was dealing with those “existential” questions, he told Quill:

“Having to deal with questions like, ‘What am I going to do with my life?’ was exceedingly difficult. After realizing I wasn’t going to die in weeks or months, figuring out what I was going to do with that time was a struggle.”

Kalanithi has reorganized his priorities since his diagnosis in May 2013, setting new priorities for a much shorter lifespan than he once expected – planning for years instead of decades. He and his wife got their finances in order, they had their first child July 4. Kalanithi said he has found solace in his love of poetry, and through his writing. Kick-starting a writing career that he had planned to start in 20 years was one of those changes.

In January, he wrote an op-ed piece for the New York Times about his cross over from physician to patient titled: “How long have I got left?” He told the audience how surprised he was at the overwhelmingly positive response he received to the story. “My own thoughts on something very personal, really resonated with people. I still get an email every other day in response to the New York Times piece. It’s a great inspiration to me to remember why writing is important.” [Editor's note: Kalanithi's recent Q&A here on Scope has also drawn massive attention; it's already one of our most popular posts of the year.]

Kalanithi’s final message, particularly to those young physicians and medical students in the audience, was to listen to your patients. Take time to get to know them. Remember why it is that you went to medical school. When asked if he treats his own patients differently since his diagnosis, he was characteristically thoughtful. “I think I felt a depth that I didn’t before… But I had excellent role models. I was trained you don’t just go over what are the risks and benefits. You really try to convey as much as you can about what it’s going to feel like.” He told his favorite example of a pediatric oncologist who he observed talking to parents whose daughter had just been diagnosed with a brain tumor. The doctor’s advice: “You need to support each other. You have to prepare your patients as much as you can for that larger emotional experiential landscape. You have to get enough sleep.”

Previously: “Stop skipping dessert:” A Stanford neurosurgeon and cancer patient discusses facing terminal illness and No one wants to talk about dying but we all need to.
Photo by Norbert von der Groeben

Cardiovascular Medicine, Chronic Disease, In the News, Research, Science, Stanford News

How best to treat dialysis patients with heart disease

How best to treat dialysis patients with heart disease

523392_4923732760_zKidney failure patients on dialysis often have other chronic diseases – heart disease topping the list. They’re prescribed an average of 12 pills a day by physicians, according to Stanford nephrologist Tara Chang, MD, and they spend three-to-four hours at a treatment center three times a week connected to an artificial kidney machine.

For Chang, this makes it all the more important that any medication she prescribes for a patient on dialysis is both essential and effective.

The problem is, particularly in the case of treating kidney patients with heart disease, evidence-based treatment guidelines just aren’t available. Kidney doctors are left making best guesses based on guidelines written for the general population.

“Our patients might be different from patients not on dialysis,” said Chang. “Dialysis patients have a lot of heart disease, yet rarely does a cardiology study enroll patients on dialysis, so we just don’t know.”

This was part of the motivation behind Chang’s most recent study examining the use of anti-platelet drugs such as clopidogrel, one of the most commonly prescribed drugs for kidney patients. The researchers looked at the use of anti-platelet medications such as clopidogrel as treatment following stenting procedures to unclog arteries in the heart in 8,458 dialysis patients between 2007 and 2010. The data suggests that longer-duration of drug use may be of benefit to patients on dialysis who get drug-eluding stents but not those who get bare metal stents. Chang told me:

We found that for those who got drug-eluting stents who took the drug for 12 months compared to those who had stopped the drug at some earlier time point, there was a non-statistically significant trend towards lower risks of death and heart attacks. So for this group, following the same guidelines as for the general population may be appropriate. However, we found no indication of benefit with longer duration of anti-platelet drug use for patients on dialysis who got bare metal stents.

About half of the 400,000 patients in the U.S. on dialysis also have coronary artery disease, as referenced in the study. The number of those getting stents inserted to unclog arteries also has increased 50 percent in the past decade, the study states. The results of the study, while not definitive as to exactly how long doctors should prescribe the drug, does stress the need for more clinical research on patients with kidney failure to provide guidance on treatment strategies for heart disease.

“Because our study was not a randomized trial,” said Chang, “we tried to be very measured in how we interpreted the results. What it does point to is the fact that we can’t assume that what works in non-dialysis patients works in dialysis patients. Hopefully our study will help convince researchers to include our dialysis patients in their studies.”

The paper was published this week in the Journal of the American Heart Association.

Previously: Keeping kidney failure patients out of the hospitalStudy shows higher rates of untreated kidney disease among older adults and Study shows daily dialysis may boost patients’ heart function, physical health.
Photo by newslighter

Ebola, In the News, Myths, Science

The slippery slope toward “a dangerous dependence on facts”

The slippery slope toward "a dangerous dependence on facts"

220px-Sputnik_asmThe ever-funny Andy Borowitz has written in The New Yorker about a previously unreported challenge in the fight against Ebola: It might make Americans believe in science. He writes:

In interviews conducted across the nation, leading anti-science activists expressed their concern that the American people, wracked with anxiety over the possible spread of the virus, might desperately look to science to save the day.

“It’s a very human reaction,” said Harland Dorrinson, a prominent anti-science activist from Springfield, Missouri. “If you put them under enough stress, perfectly rational people will panic and start believing in science.”

For someone who left science to become a writer specifically to help explain science to the public, this piece is both funny and also so very not funny at the same time. Almost 20 years after I put down my pipette, Americans are, if anything, less willing to let science guide their health, energy, or environmental decisions than they were back when I started – thus the humor in Borowitz’ piece.

All of this makes me wonder if I could have spared myself several decades of worrying about clever analogies, agonizing about transitions, and racing the clock to make deadlines and done something less stressful with my life. Something fulfilling. Something where at the end of the day, my work would help people live happier, healthier lives rather than producing something people will ignore if it doesn’t fit their ideology.

Matthew Nisbet and Dietram Scheufele have written a number of articles about science communication and its effects on public perception of science. In the American Journal of Botony they write, “Often when the relationship between science and society breaks down, science illiteracy is typically blamed, the absence of quality science coverage is bemoaned, and there is a call put out for ‘more Carl Sagans.’”

In a nutshell, that sums up my career switch. I bemoaned the absence of quality science coverage and fully intended to fill that gap.

Then, they go on to shatter my reasons for writing by pointing out that at a period of time when the public’s regard for science was at it’s highest – soon after the Sputnik launch – science literacy was abysmal. In one survey at the time, just 12 percent of people understood the scientific method, yet 90 percent of people believed that science was making their lives better.

What that survey suggests is that even a scientific challenge like Ebola is unlikely to push Americans to be better educated about science. But perhaps with the perfect transition, or really outstanding analogy, those same scientifically illiterate Americans can be convinced that science is making life better and – I’m really dreaming here -should be funded?

If yes, maybe Borowitz’ fictional anti-science advocate will be proved right, and we will head down that slippery slope “in which a belief in science leads to a belief in math, which in turn fosters a dangerous dependence on facts.” One can hope!

Previously: Scientist: Just because someone’s on TV doesn’t mean they’re an expert

Immunology, In the News, Parenting, Pediatrics

Ivy and Bean help encourage kids to get vaccinated

Ivy and Bean help encourage kids to get vaccinated

Ivy and Bean2Last week, I took my two little boys to get their shots, including the MMR vaccine that protects against measles, mumps and rubella. Although, as a mom, it’s easy for me to understand the value of vaccines, I’m not sure my preschooler was completely convinced that getting poked in the arm was a great idea.

That’s why I am thrilled to see “Ivy and Bean vs. The Measles,” a set of posters and other educational materials that Sophie Blackall, the illustrator of the popular series of children’s books, has produced in collaboration with the Measles and Rubella Initiative. Blackall’s illustrations show Bean, one of the book’s two heroines, devising a series of unconventional strategies for avoiding the measles: wear a biohazard suit for the rest of your life, get adopted by a polar bear, or (my personal favorite) cover yourself in a 6-inch protective layer of lard.

“Or,” says Ivy, “get vaccinated!”

My son would probably be most interested in Bean’s suggestion to “Move to the moon!” He loves all things outer space-related, and I love the idea of finding something at our doctor’s office that would spark his interest and help me explain to him why he needs that brief poke in the arm.

Bravo, Ivy and Bean!

Via Shots
Previously: Side effects of childhood vaccines are extremely rare, new study finds, Measles is disappearing from the Western hemisphere and Tips for parents on back-to-school vaccinations
Artwork by Sophie Blackall

In the News, Microbiology, Public Health, Research

The end of antibiotics? Researchers warn of critical shortages

The end of antibiotics? Researchers warn of critical shortages

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Bacteria spark infection. Antibiotic kills most bacteria. Remaining bacteria evolve resistance. Second antibiotic wipes out all bacteria. Repeat. Repeat until, that is, there are no effective antibiotics, a scenario that looks increasingly likely, according to recent research from the Center for Molecular Discovery at Yale University led by Michael Kinch, PhD. Kinch now leads the Center for Research Innovation in Business at Washington University in St. Louis, which featured his work in a recent article:

The number of antibiotics available for clinical use, Kinch said, has declined to 96 from a peak of 113 in 2000. The rate of withdrawals is double the rate of new introductions, Kinch said. Antibiotics are being withdrawn because they don’t work anymore, because they’re too toxic, or because they’ve been replaced by new versions of the same drug. Introductions are declining because pharmaceutical companies are leaving the business of antibiotic use discovery and development.

Many of the major players like Pfizer, Eli Lilly, AstraZeneca and Bristol-Myers Squibb are no longer developing antibiotics, Kinch wrote in a recent article in Drug Discovery Today. In part, their disinterest is driven by a tight profit window. The drug approval process takes about 11 years, but a patent only provides 20 years of protection, leaving just nine years to recoup development costs, according to Kinch.

As outlined in the Washington University piece, at least two major initiatives are working to reverse this trend. The Infectious Diseases Society of America introduced the 10 x ’20 Initiative to spur efforts to create 10 new antibiotics by 2010. And Britain is sponsoring the Longitude Prize 2014, a £10 million award for a simple test that will quickly determine the type of bacteria causing an infection and therefore the most effective antibiotic.

Previously: Healthy gut bacteria help chicken producers avoid antibiotics, Free online course aims to education about “pressing public health threat” of antibiotic resistance and Side effects of long-term antibiotic use linked to oxidative stress
Photo by CDC Public Health Image Library

Aging, Health Policy, In the News, Neuroscience, Patient Care

The toll of Alzheimer’s on caretakers

The toll of Alzheimer’s on caretakers

Loving Hands Vannesa Pike-Russell FlickrMy last grandparent, my paternal grandmother, passed away earlier this year. She lived into her 90s and, like both my maternal grandmother and grandfather, she suffered mild to moderate dementia in the final years of her life. My mother cared for each of them as one by one their health declined. She had ample support from our extended family, but she was the one who had to bathe them and help them go to the bathroom or remind repeatedly them that so-and-so relative had died many years ago. My parents’ experience taking care of elderly family members who no longer had their full mental faculties lasted two to three years in each case, unlike people who care for family members with Alzheimer’s disease – a task that can last a decade or more.

Last week, Tiffany Stanley wrote a feature in the National Review about her experience caring for her ailing aunt, Jackie, who was diagnosed with early onset Alzheimer’s. Stanley’s father had been caring for his sister when his congestive heart failure made him too ill to continue, so his 29-year-old daughter stepped in. She was unprepared for the realities of caring for an Alzheimer’s patient, and she chronicles her experiences with touching anecdotes about her family’s experiences, as well as a detailed look at Alzheimer’s care in the U.S. She also details the impact the disease has on caregivers:

Alzheimer’s places a heavy toll on family caregivers. Their own health suffers. Dementia caregivers report higher rates of depression and stress than the general population. Some studies show they have an increased risk for heart disease and stroke as well as higher mortality rates. Their own use of medical services, including emergency-room visits and doctors’ appointments, goes up, and their yearly health care costs increase by nearly $5,000, according to research from the University of Pittsburgh and the National Alliance for Caregiving. “Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving,” reads an article in the American Journal of Nursing.

Stanley also writes about the tension between funding a cure – to keep people from spiraling late stage dementia – and caring for those who are already sliding down that route:

Lost too often in the discussion about a cure has been a much more basic, more immediate, and in many ways more important question: How can we better care for those who suffer from the disease? Dementia comes with staggering economic consequences, but it’s not the drugs or medical interventions that have the biggest price tag; it’s the care that dementia patients need. Last year, a landmark Rand study identified dementia as the most expensive American ailment. The study estimated that dementia care purchased in the marketplace—including nursing-home stays and Medicare expenditures—cost $109 billion in 2010, more than was spent on heart disease or cancer. “It’s so costly because of the intensity of care that a demented person requires,” Michael Hurd, who led the study, told me. Society spends up to $56,000 for each dementia case annually, and the price of dementia care nationwide increases to $215 billion per year when the value of informal care from relatives and volunteers is included.

The story is equal parts frustrating and heart-wrenching, but I came away much better informed about what a diagnosis entails, not just for the patients, but the families connected to them.

Previously: No one wants to talk about dying, but we all need to, Mindfulness training may ease depression and improve sleep for both caregivers and patients, Can Alzheimer’s damage to the brain be repaired?The state of Alzheimer’s research: A conversation with Stanford neurologist Michael Greicius and Exploring the psychological trauma facing some caregivers
Photo by Henry Rabinowitz

Ebola, Global Health, In the News, Infectious Disease

Ebola: A look at what happened and what can be done

Ebola: A look at what happened and what can be done

As of September 28, the World Health Organization (WHO) estimates that, so far, more than 7,100 people have been infected with and more than 3,300 have died from the Ebola virus. These estimates of what has happened are almost certainly far too low; the estimates of what will happen are terrifyingly high. The current Ebola epidemic may well become the worst human disaster in this century. And we are not doing enough about it.

Ebola is unlikely to become a major problem in the developed world. But… it seems increasingly likely that hundreds of thousands, and quite possibly millions, of men, women, and children will be struck down by this ghastly plague

What happened?

Researchers will be trying to answer that question for years. This is the 24th known outbreak of Ebola virus disease since it was first recognized in 1976. All of the other outbreaks burned themselves out quickly, after between one and 425 people had been infected. Over nearly 40 years, fewer than 2,500 people are known to have become infected and fewer than 1,500 to have died. The outbreaks were all in Central Africa; they killed people in scattered villages, with few Western connections and fewer Western media on site.

However, the current outbreak started in West Africa, not Central Africa. I suspect this change in location will prove to be the key change, not so much in how it has affected human responses but how it has affected human susceptibility. Yes, the health infrastructures in Guinea, Liberia, and Sierra Leone were very poor (and are now far worse), but they were no worse than those in the Democratic Republic of Congo, South Sudan, or Uganda, the sites of most of the earlier outbreaks. But the lands where this outbreak start are more densely populated and better connected. Instead of burning out in one or two villages, hidden away in dense jungle, the virus spread from village to village, from village to town, and eventually from town to city. When it hit Monrovia, the slum-ridden, million-person capital of Liberia, an explosion was probably inevitable. (It has recently begun to expand in Freetown, the capital of Sierra Leone, as well as Conakry, the capital of Guinea.)

The growth of the epidemic has brought with it the growth of terror and the destruction of already tenuous trust, both in governments and in modern health care. It has also brought death from other, treatable conditions that cannot now be treated in health care systems that Ebola has collapsed. It has brought restricted transportation and supplies and, as a result, in some places, sharply higher food prices. It may eventually bring, in spots, starvation.

Recriminations have already started. Why didn’t the West provide powerful help in March 2014, when the epidemic (already about a year old) began to be noticed? Or why hasn’t Western science, expensively pursuing the latest “me too” drug for common Western conditions, produced a treatment, cure, or vaccine for Ebola? These critiques seem too harsh. No previous epidemic has ever ballooned like this one, even in Central Africa. And the chance of an epidemic outside those traditional regions, let alone in the West, appeared remote.

And while some have pointed fingers at the West, others have focused on the behavior of the affected West African populations. Much has been made of their reluctance to abandon traditional methods of burying their dead, their lack of trust in modern medicine, and even their physical attacks on health care workers. But before blaming the victims for their poor infection control measures, put yourself in their shoes. A five year old – perhaps your five year old – is feverish and vomiting. She is crying and holding her arms out to you for comfort, for help. In West Africa you would not have the chance to telephone for an ambulance, with well-protected professionals to treat the child. Touching her could kill you. But what would it do to you – what would it make of you – to ignore her? As Benjamin Hale wrote in Slate, Ebola is a fantastically cruel disease, turning against us our own compassion, care, and love.

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In the News, Neuroscience, Research, Stanford News

Stanford neurobiologist shares insights from working in Nobel-winning lab

Stanford neurobiologist shares insights from working in Nobel-winning lab

Pic3Yesterday’s Nobel Prize announcement delighted Stanford neurobiologist Lisa Giocomo, PhD -  and not because she had taken home the coveted honor. Giocomo came to Stanford last year from Norway, where she worked first as a postdoc and later as a colleague of Edvard and May-Britt Moser (both PhDs), two of the three 2014 Nobel Prize winners in physiology or medicine.

Giocomo (to the right of the Mosers in the photo here) didn’t get a chance to congratulate her former mentors yesterday due to the time difference. But she said Edvard was shocked when he was greeted by reporters and colleagues bearing flowers as he stepped off a plane yesterday: “I don’t think they were expecting it at all,” Giocomo said.

The discovery that shot the Mosers to the top of the science world (along with London-based researcher John O’Keefe, PhD) involves the inner maps that humans and other animals use to navigate. The Mosers discovered grid cells, a type of nerve cell in the brain’s entorhinal cortex that fires when an animal moves to certain points (for example, when a rat stands on the holes of a giant Chinese checker board).

The Mosers lead a large lab group at the Kavli Institute for Systems Neuroscience, one that Giocomo was drawn to so she could pursue her investigation of computational models of single-cell biophysics. Yet despite the size of a lab, Giocomo said the group felt like a family.

“They’re very good scientists, but they’re also really nice people and very gracious mentors,” Giocomo said. “They were always very good at making time for everyone in the lab… It’s also very collaborative.”

And unlike many partnerships, the Mosers truly work together, Giocomo said. “The lab is really run as a single entity.”

Giocomo, a member of the Stanford Neurosciences Institute, said she considered staying to work with the Mosers, but ultimately chose to join the Stanford faculty. And when asked about her own Nobel aspirations, Giocomo laughed. “I’m just focusing on building a lab,” she said. “I have many other short-term goals.”

Previously: Say Cheese: A photo shoot with Stanford Medicine’s seven Nobel laureates, Stanford researcher Roger Kornberg discusses drive and creativity in Nobel Prize Talks podcast  and Stanford winners Michael Levitt and Thomas Südhof celebrate Nobel Week
Photo courtesy of Lisa Giocomo

Ethics, FDA, Health Policy, In the News, Stanford News

Stanford experts weigh in on spate of “right to try” laws for the terminally ill

Stanford experts weigh in on spate of "right to try" laws for the terminally ill

4286759185_f958aedc10_zTerminally ill patients should be able to access medication that could help them, regardless of how far along that drug might be in the FDA‘s in-depth approval process, right? Yes, some states such as Colorado, Missouri and Lousiana have said. They’ve adopted so-called “right-to-try” laws that gives dying patients access to drugs that have passed only the first stage of the FDA approval process.

Yet these laws — which are modeled on a policy from the libertarian Goldwater Institute — are ultimately useless given that federal law trumps state law, according to Stanford scholars Patricia Zettler, JD, and Henry Greely, JD, in an opinion piece published recently in JAMA Internal Medicine. In addition, the laws are redundant, they write:

Since the late 1980s, patients with serious and terminal conditions have been treated with unapproved medical products. Following sharp criticism from AIDS access about blocking access to potentially effective, but unproved, treatments, as well as congressional intent, the FDA issued regulations that are intended to provide patients with faster access to novel drugs for life-threatening conditions… Although satisfying the agency’s requirements may, at first glance, seem onerous, in practice the FDA very rarely rejects requests for expanded access.

Zettler, who formerly worked for the FDA, pointed out a link that is telling: During fiscal year 2012-2013, the FDA received 977 requests for “expanded access” (these requests may include more than one patient, Zettler said). It approved 974 of them.

None of the state or federal laws require a drug company to provide experimental drugs, and Zettler said she knows of only one - NeuralStem, Inc., a Maryland-based company that is developing therapies for central nervous system disorders –  that intends to provide drugs under these laws. By skipping the FDA’s process, the companies risk angering the FDA, whose favor they need for their drug approval, Zettler told me.

Why then these laws, which are currently also being considered in Michigan, Nevada and Arizona?

Well, Zettler told me, they’re political no-brainers. Imagine the political rants: “So-and-so made my mom die faster,” or “Joe Baloozabum opposes dying patients” – nope, that doesn’t fly inside any Beltway. Many state politicians are also motivated by a “good faith desire to help people,” Zettler said.

But she doubts that states have the expert staff needed to evaluate drug applications. And they don’t have the legal green-light either, she said, pointing out a recent ruling blocking Massachusetts’ attempt to ban a long-acting opiod.

Zettler said the state-based debates simply add a new wrinkle to a discussion that’s been percolating for decades.

Previously: No one wants to talk about dying, but we all need to and Asking the hardest questions: Talking with doctors while terminally ill
Photo by Melanie Tata

Genetics, In the News, Research, Science

Zebrafish: A must-have for biomedical labs

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Rats, mice and fruit flies be warned: The hippest lab critter around is a striped, little fish from South Asia called the zebrafish.

The fishies’ popularity is skyrocketing, as Susannah Locke recently wrote for Vox:

Zebrafish breed quickly, scientists can manipulate their genes easily, and the fish actually share a surprising number of similarities with humans.

As a result, researchers can study zebrafish to better understand how things like metabolism, birth defects, and even cancer work — and the results are often applicable to humans. So, for instance, it’s relatively quick and easy to test certain drugs on zebrafish. If those experiments yield promising results, the scientists can then do more targeted experiments with rodents. And then maybe, finally, with people.

Zebrafish have some unique characteristics that can be useful too: Zebrafish can regenerate heart, retina, spinal cord and fin tissue. Scientists are probing this ability to improve healing and potentially even cultivate new tissues. Their embryos are also transparent, allowing scientists to study organ development in real-time.

Scientists have grown quite masterful at manipulating their genes. As Locke writes: “Over the past five years, the cost of modifying a single gene in a zebrafish has dropped from $10,000 down to about $100.” That’s part of the reason why more than 2,000 biomedical papers are written each year using the fish.

Joseph Schech, DVM, knows these animals well:

“They’re very hardy. They’re very forgiving,” says Schech, a laboratory veterinarian in charge of roughly 200,000 zebrafish (and several other species) at the National Institutes of Health. ”They are very adaptable in the wild. They live in clear mountain streams. They live in muddy rice paddies. They can do a wide range of temperature if they have time to adapt to it.”

He’s in charge of keeping the creatures healthy in a NIH zebrafish facility that’s currently used by some 21 different laboratories. It’s one of the largest zebrafish facilities in the world — a single 78–80°F room that holds about 10,000 small tanks with a total of roughly 200,000 fish. The zebrafish eat a diet of brine shrimp grown in a nearby room and can be trained to spawn on cue.

Numerous Stanford labs use zebrafish for all sorts of research: William Talbot, PhD, is examining the development of the vertebrate nervous system; Gill Bejerano, PhD, is probing its genetics; and James Chen, PhD, is looking at its ability to regenerate tissue, to name just a few.

Previously: Researchers capture detailed three-dimensional images of cardiac dynamics in zebrafish, The importance of the zebrafish in biomedicineCellular-level video of brain activity in a zebrafish and A very small fish with very big potential
Image by Bob Jenkins

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