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In the News, Pain, Patient Care, Research, Stanford News

More attention, funding needed for headache care

More attention, funding needed for headache care

In case you missed it, the San Francisco Chronicle ran a story over the weekend on migraines – and researchers’ ongoing search for a cause and universal treatment. Robert Cowan, MD, director of the Stanford Headache Clinic, was one of the people featured and told writer Stephanie M. Lee:

Headache care is 50 years behind things like diabetes and cancer… It just hasn’t had the attention, hasn’t had the funding, in order to get to the answers we need.

Previously: Director of Stanford Headache Clinic answers your questions on migraines and headache disorders and New Stanford headache clinic taking an interdisciplinary approach to brain pain

In the News, Stanford News

A curated selection of news from Dean Lloyd Minor

A curated selection of news from Dean Lloyd Minor

What should you be reading today? Over on OZY’s Presidential Daily Brief, Lloyd Minor, MD, dean of the medical school, points readers to some of the most interesting stories in medicine, bioscience and beyond. Among his picks as guest curator are a recent Atlantic article on creativity and a Guardian piece on hill climbing. Of the latter he writes:

Climbing and walking in the hills provides beneficial exercise, relaxation and renewal. Hope Whitmore, a writer living outside Edinburgh, Scotland, describes her journeys as well as her struggles with rheumatoid arthritis. As someone who loves to walk two dogs in the foothills of the Santa Cruz Mountains, I can certainly relate to Whitmore’s description of her evening walks as “a healing, a cleansing of the soul, drawing a line between the workaday world and the night time.”

Previously: A closer look at Stanford medical school’s new dean

HIV/AIDS, In the News

Mourning the loss of AIDS researcher Joep Lange

Stanford researchers specializing in HIV/AIDS mourned the loss today of Dutch scientist Joep Lange, MD, PhD, a leading AIDS researcher who died in the Malaysian Airlines crash yesterday in Ukraine. Lange, a virologist, was particularly well-known for his work in helping expand access to antiretroviral therapy in developing countries. He was among dozens of people on the ill-fated flight who were heading to the 20th International AIDS Conference that opens Sunday in Melbourne, Australia.

“We are all in a state of shocked disbelief here in Melbourne at the tragic loss of one of the giants in the global fight against AIDS and HIV,” Andrew Zolopa, MD, professor of medicine at Stanford, told me in an e-mail from the conference site. “I have known Joep Lange for more than 25 years – he was a friend and a colleague.  Joep was one of the early leaders in our field to push for expanded treatment around the globe – and in particular treatment for Africa and Asia… The world has lost a major figure who did so much good in his quiet but determined manner.  I am shocked by this senseless act of violence. What a terrible tragedy.”

David Katzenstein, MD, also an HIV specialist at Stanford, learned of the death while in Zimbabwe, where he has a long-standing project on preventing transmission of HIV from mother to child. He said Lange, a friend and mentor, had been a “tireless advocate for better treatment for people living with HIV in resource-limited settings. He was universally respected and frequently honored as a real pioneer in early AIDS prevention and treatment.” In 2001, Lange founded the PharmAccess Foundation, a nonprofit organization based in Amsterdam, which aims to improve access to HIV therapy in developing countries. He continued to direct the group until his death.

Lange served as president of the International AIDS Society from 2002 to 2004 and had been a consultant to the World Health Organization, the federal Centers for Disease Control and Prevention and the National Institutes of Health. He led several important clinical trials in Europe, Asia and Africa and played a key role in many NIH-sponsored studies, said Katzenstein, a professor of medicine.

“He was a gentle, thoughtful and caring physician-scientist with a keen sense of humor and a quick and gentle wit. He was constantly absorbing, teaching and thinking about the human (and primate) condition and psychology,” Katzenstein told me. “He was much loved and will be sorely missed.”

HIV/AIDS, In the News, Public Health

Free, one-minute HIV testing…while you shop for clothes?

Free, one-minute HIV testing...while you shop for clothes?

outoftheclosetPerhaps you’re familiar with cafe-laundromats or sushi restaurants with tap dancing. But did you ever visit a second-hand clothing and furniture store to take care of your health-care needs? An audio segment and post on the KERA News (Dallas) blog features a local Out of the Closet shop with a free HIV testing site, and soon a community pharmacy, inside their thrift store – making it the 22nd branch of the U.S. chain to have both.

Bret Camp, the Texas regional director of the AIDS Healthcare Foundation, which operates the thrift stores, said in the post, “Our pharmacy will have everything from blood pressure meds to diabetes supplies…How many places can you go and look at jeans while you’re waiting for your medication?”

More from the post:

It’s an innovative idea, says [Douglas Owens, MD,] a professor of medicine at Stanford University who also serves on the U.S. Preventive Services Task Force.

A number of organizations, including the CDC and U.S. Preventive Services Task Force recommended universal HIV testing. Of course testing is only the first step, Owens says.

“When people get an adequate treatment for HIV, the drugs reduce their infectivity and so treatment for HIV not only benefits the person who has HIV; it also provides a very important public health benefit that reduces transmission,” Owens explains in the audio segment.

Previously: Task force recommends HIV screening for all people aged 15 to 65, Using Facebook to prevent HIV among at-risk groupsTask force issues draft recommendation for universal HIV screening and National HIV screening and testing could be very cost-effective
Photo by Marilyn Roxie

Ethics, In the News, Research, Transplants

Physicians more likely to become organ donors, Canadian study finds

Physicians more likely to become organ donors, Canadian study finds

When receiving advice from a physician, one might wonder what the doctor would choose for him- or herself. Recently we discussed here a study on doctors’ preferences for their own end-of-life care. Now, a study published in the Journal of the American Medical Association has reported on physicians’ views and behavior surrounding their own organ donation.

As a news@JAMA piece reports on the Canadian study, physicians are nearly 50 percent more likely than non-physicians to register as an organ donor. More from the piece:

Despite waiting lists for organs in many countries, the percentage of individuals registered in national organ donation registries in most countries is below 40%. The United States fares a bit better than average, with 48% of adults registered as organ donors.

Concerns about organ donation have led to lower-than-average rates of registration in Ontario, Canada, where only about 25% of adults have registered. Currently, there are more than 1500 people on transplant waiting lists in Ontario.

Study author Alvin Ho-ting Li, BHSc, a PhD candidate at Western University in Ontario, Canada, discusses the study’s purpose and findings further in a Q&A section of the piece.

Previously: More on doctors and end-of-life directivesStudy: Doctors would choose less aggressive end-of-life care for themselvesStudents launch Stanford Life Savers initiative to boost organ donation and Family ties: One sister saves another with live liver donation

Cancer, Imaging, In the News, Patient Care, Stanford News, Technology

New technology enabling men to make more confident decisions about prostate cancer treatment

New technology enabling men to make more confident decisions about prostate cancer treatment

To watch and wait, or operate? There’s quite a bit of confusion, and a variety of differing opinions from the medical community, regarding prostate cancer treatment – so it’s no wonder that some men question whether the treatment path they’ve chosen is the right one. A new technology at Stanford, though, is hoping to alleviate some of the confusion and help with the decision-making process.

By using a combination of ultrasound and MRI imaging, Stanford physicians can use the resulting 3D images to get a far more detailed look at the level of cancer and its aggressiveness than they were able to in the past. Patients, in turn, will be empowered with the knowledge to make more confident decisions about how, and whether, to proceed with treatment. ABC7 News recently aired a story on the new technology.

Previously: Six questions about prostate cancer screening, Ask Stanford Med: Answers to your questions on prostate cancer and the latest research and Making difficult choices about prostate cancer

Genetics, In the News, Pediatrics, Research

New Yorker story highlights NGLY1 research

New Yorker story highlights NGLY1 research

PackardGirl260x190The new issue of the New Yorker, out today, includes a fascinating medical story with a notable Stanford connection. As we’ve described before, a team of scientists from institutions around the world reported earlier this year on their discovery of a new genetic disease, NGLY1 deficiency. Stanford’s Gregory Enns, MB, ChB, was co-lead author of the paper describing the new finding, and one of his patients, Grace Wilsey, was among the small group of children in whom the disease first was identified. Grace’s inability to make tears when she cries was a key clue in unlocking the mystery of the disease.

But, as the New Yorker piece (subscription required) explains in detail, there’s much more to the story than that. In particular, it tells how the families of patients – especially Grace’s parents, Matt and Kristen Wilsey, and Matt and Cristina Might, who are the parents of index patient Bertrand Might – successfully encouraged researchers at different institutions to collaborate with each other in a way that advanced the discovery with exceptional speed. This was counter to the usual practice in science, the story explains. Typically, scientists avoid sharing data with competitors, even if doing so would advance the research:

If a team hunting for a new disease were to find a second case with the help of researchers from a competing lab, it could claim to have “solved” a new disease. But it would also have to share credit with competitors who may have done nothing more than grant access to existing data. When I asked [Duke University geneticist and NGLY1 deficiency co-discoverer Vandana] Shashi if she could imagine a scenario that would result in one research team’s publishing a paper with data from a different research group working on a similar project, she said, “Not that I can think of.”

David Goldstein [another Duke geneticist who collaborated with Shashi] added, “It’s not an overstatement to say that there are inherent conflicts of interest at work.” Daniel MacArthur, a genetics researcher at Massachusetts General Hospital, is even more blunt. “It’s an enormous deal,” he told me. “And it’s a big criticism of all of us, but it’s a criticism we all need to hear. The current academic publication system does patients an enormous disservice.”

Fortunately for patients like Grace and Bertrand, and for the doctors who want to help them, the culture is shifting. One marker of the shift is the NIH’s announcement earlier this month that it will be expanding its Undiagnosed Diseases Program to a network of seven sites across the country (including Stanford) and building in a requirement that all seven centers share data with each other.

Another is that researchers are realizing that families like the Wilseys and Mights will continue to make an impact. In fact, the Wilsey family has recently launched the Grace Wilsey Foundation to raise awareness about NGLY1 deficiency and promote investigation of possible treatments for the disease.

As Shashi puts it at the conclusion of the New Yorker story:

“Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’”

Previously: NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases and Crying without tears unlocks the mystery of a new genetic disease
Photo of Grace Wilsey courtesy of Lucile Packard Children’s Hospital Stanford

In the News, Science, Stanford News

Internships expose local high-schoolers to STEM careers and academic life

Internships expose local high-schoolers to STEM careers and academic life

beakersIt’s summertime: Do you know where your teenagers are? A piece in the Palo Alto Weekly discusses some of the choice science internships available to local high-school students at Stanford and other universities in the region. Shadowing scientists in the lab and even contributing to research, the young interns learn real-world applications for subjects they learn in school. They also gain work experience and exposure to academic careers in STEM fields. And a high-profile internship couldn’t hurt to include on college applications.

From the piece:

Coordinators often have to sift through hundreds of applications from students applying from all over the country and internationally. One of the most sought after is the Stanford Institutes of Medicine Summer Research Program, which alone received about 1,400 applications this year to fill about 70 to 75 openings. Decisions are based on academic grounds to help narrow down the number of prospective candidates — a tough task in a pool of extremely well-educated candidates.

But coordinators also recognize the need to provide opportunities for students who don’t have the chance to join accelerated science programs and express that oftentimes the most important quality of an applicant is a passion for science.

The article notes that internships gained through family and friend connections can be unevenly distributed, and  how programs like Stanford’s Raising Interest in Science and Engineering (RISE) Summer Internship Program have made the experiences more accessible. More from the piece:

“Typically those are kids with very educated parents who speak fluent English and who are comfortable poking around Stanford a little bit … or have a network and know somebody who works in a lab here. The RISE students typically just don’t have family members that can help them in that way,” [Kate Storm] says. “I think it’s important to serve all students, not just the privileged gifted students who are going to thrive and do well no matter what because they’ve got the backing of their school and parents and siblings.”

These types of opportunities are important to start curbing the racial disparities that exist in STEM occupations. Roughly 70 percent of the people in STEM occupations were Caucasian, 14 percent Asian, 6.5 percent Hispanic and 6.4 percent African American, according to an American Community Survey Report from the U.S. Census Bureau in 2011. Since 2008, Storm says about 80 percent of RISE graduates have gone on to major in math, engineering or science in college.

Researchers are also passionate about increasing the number of girls in labs since women are also largely underrepresented in STEM fields. The same 2011 U.S. Census Bureau report stated that roughly 25.8 percent of those in STEM occupations are women, compared to 45.7 percent of all jobs.

Previously: Residential learning program offers undergrads a new approach to scientific inquiry, The “transformative experience” of working in a Stanford stem-cell lab, Image of the Week: CIRM intern Brian Woo’s summer projectImage of the Week: CIRM intern Christina Bui’s summer project and Stanford’s RISE program gives high-schoolers a scientific boost
Photo by Amy

In the News, Neuroscience, Research, Stanford News

A spotlight on Stanford scientists’ use of deep-brain stimulation to eavesdrop on problem neural circuits

A spotlight on Stanford scientists' use of deep-brain stimulation to eavesdrop on problem neural circuits

Earlier this week, KTVU-TV aired a segment highlighting Stanford scientists’ ongoing research using deep-brain stimulation to control Parkinson’s patients’ tremors and record brain activity. A patient interviewed for the piece said the treatment “made a huge difference in my life” and called it “revolutionary.” More from the piece:

The new stimulator nicknamed “brain radio” is developed by Medtronic and tested by [Stanford neurologist Helen Bronte-Stewart, MD, and colleagues.]

“We can for the first time record the neural activity in the brain directly from the deep brain stimulator in somebody’s chest,” she said.

Despite decades of research, doctors have only a sketchy ideas of how the brain works, but now using Medtronic’s device they are for the first time opening a window into the human brain.

“I would think there will be developments that we don’t really know about right now that will come from some of the things we find out as we do this research,” said Bronte-Stewart.

Previously: Stanford conducts first U.S. implantation of deep-brain-stimulation device that monitors, records brain activity

In the News, Science

Stanford researcher on elephants: “We should value animals that have the same level of sophistication that we do”

Stanford researcher on elephants: “We should value animals that have the same level of sophistication that we do"

elephantsThe July issue of Smithsonian Magazine has a lengthy feature on the crisis facing elephants in Africa, with writer Joshua Hammer explaining, “Of the 50,000 elephants that roamed Chad 50 years ago, barely 2 percent are left. In the neighboring Central African Republic and Cameroon, the population may be even lower. Poverty, bribery and insecurity are all contributing factors in a region where a single large tusk can sell on the black market for $6,000—ten times the annual salary of a typical worker.”

Quoted in the piece is Stanford’s Caitlin O’Connell-Rodwell, PhD, a consulting assistant professor of otolaryngology, who has done extensive field work with the animals. She describes the connection between elephants and humans and expresses deep concern about the animals’ risk of becoming extinct:

“What is special about elephants is just how similar they are to us—socially and developmentally,” says Caitlin O’Connell-Rodwell, a Stanford ecologist who has written four books based on her Namibian field research on elephants. “If you watch a family group reuniting, their behavior is exactly like ours—the little cousins darting off together, the elaborate greetings of adults. Elephants offer a way of looking into the mirror, for better or worse,” she adds. “If we value human rights, we should also value animals that have the same level of sophistication that we do. We should keep those beings with us here on earth.”

Previously: Listening to elephants, communicating science, and inspiring the next generation of researchers, Elephants chat a bit before departing water hole, new Stanford research shows and Researcher dishes on African elephant soap opera
Photo by Caitlin O’Connell-Rodwell and Timothy Rodwell

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