NIH Sponsors New Website to Help Patients Understand Clinical Trials

This week the NIH launched a new website, NIH Clinical Research Trials and You. In a Feb 6 press release, NIH Director Dr. Francis S. Collins said “The ability to recruit the necessary number of volunteers is vital to carrying out clinical research.” The idea behind the website is to help patients understand how clinical research works, and what it’s like to participate.

The site offers a menu of “basics” about clinical trials, addressing topics like:

  1. What are clinical trials and why do people participate?
  2. What is clinical research?
  3. Who participates in clinical trials?
  4. What do I need to know if I am thinking about participating?
  5. What questions should I ask if offered a clinical trial?
  6. How am I protected?
  7. What happens after a clinical trial is completed?
  8. How does the outcome of clinical research make a difference?

There’s an imperfect glossary of terms, a selection of patients’ and investigators’ stories, information for kids in research, and other resources including a link to the clinical trials database:  ClinicalTrials.gov.

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The BC Sisterhood Takes on Sex After Cancer and What Oncologists Don’t Say

A hit in the women’s breast cancer Twitter league came my way from the Breast Cancer Sisterhood®. Brenda Coffee, a survivor and founder of the Survivorship Media Network, offers a serious post on What Your Oncologist Doesn’t Tell You About Sex.

There’s a music video, Don’t Touch Me that’s annoying but depressingly right on how some women feel in menopause –  a frequent and under-discussed aspect of chemo or hormonal therapy for BC, followed by a grounded and unusually frank discussion about what happens to women after cancer treatment, menopause and sex.

Brenda’s right; none of this was included in my med school curriculum or oncology fellowship. Although, in fairness and quite seriously, this was a subject on mine and some other oncologists’ radar long ago. Cancer treatments can have lasting effects on sexuality in men and women.

Worth checking out Brenda’s network and her candid post. You can follow her @BCSisterhood on Twitter.

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A Medical School Problem Based Learning (PBL) Parody of ‘The Office’

Last week a video came my way via ZDoggMD, a popular blog by doctors who are not me.

The Office Med School Edition

The clip is a parody of The Office about Problem Based Learning (PBL).

In a typical PBL, the students meet regularly in small groups. On Monday they begin with clinical aspects of a case. The process involves finding information and researching relevant topics to “solve” the diagnosis and /or a treatment dilemma. Over the course of each week the students move forward, working through a hypothetical patient’s history, physical exam and lab studies to the nitty-gritty of molecules, genes and cells implicated in a disease process.

It’s a lot of fun, usually.

The video was uploaded in February, 2007. It’s attributed to a group of med students at the University of Pittsburgh, class of 2009.

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Shoutout: This Week’s Grand Rounds Hosted by the Prepared Patient Forum

Yesterday’s medical-blog Grand Rounds, on What it Takes, is hosted by the Prepared Patient Forum. There’s a nice array of diverse posts. Among my favorites this week are from patients’ perspectives: by Warm Socks, on complex and simple physical systems for remembering to take pills and by Heart Sisters, on ditching the bucket list.

I recommend the Prepared Patient® blog in general; it covers patient-doctor relationships, medical ethics, health care economics and related issues. The forum includes a “dial 411” section with links to on-line, telephone and community resources for patients. The website is sponsored by the Center for Advancing Health, a D.C.-based institute.

The center’s stated mission is to conduct research, communicate findings, and advocate for policies that support everyone’s ability to benefit from advances in health science.

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E-Patient Dave Explains What It Means to Be An E-Patient

Med-blog grand rounds this week is hosted by e-patient Dave, who is Dave deBronkart, a real man who was diagnosed with a renal cell (kidney) cancer a few years back. He’s a terrific speaker and an Internet friend.

By coincidence I was searching for the definition of an e-patient, and came upon it there, in a video of his presentation at the TED (for those of you in the 1990s, that would be Technology, Entertainment, Design ideas worth spreading) “x” – meaning independently-organized meeting held in Maastricht a few weeks ago. Dave and others spoke on the topic of “The Year of Patients Rising.”

Dave explains: An e-patient is empowered, engaged, equipped and enabled. Got it?

e-patient Dave, in Maastricht

In Dave’s bio, he attributes the “e-patient” term to the late Dr. Tom Ferguson, a physician and author who, with Dave and others, founded the Society for Participatory Medicine.

All for today –

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On My Mind

Yesterday I checked in on the Cancer Culture Chronicles, a thoughtful and sometimes funny blog by Anna Rachnel, who lives with metastatic breast cancer.

There I learned that the author of Living With Cancer, a blog I’d read occasionally and has been in the back of my mind lately, is dead. Sadly, I never had the chance to meet or speak with Daria.

From a eulogy in the final blog entry: She was born in 1961 in Alberta, Canada. Her breast cancer diagnosis came on in 2000, when she was 39 years old. She received surgery, chemo and radiation and additional meds. According to her first blog entry of August 2008, she’d had a local recurrence in 2004. The disease came back on the other side and elsewhere around then she started her blog. Among other things she accomplished in her life, about which I know too little, she participated in a clinical trial of an experimental drug, Brivanib, and advocated for cancer patients by speaking with members of the Canadian Parliament. She died this past January, a few days before her 50th birthday, survived by her mother, sisters, brother and husband.

From Daria’s first post, upon her 2008 recurrence: “…It is still too difficult to discuss the details. I’m hoping that sharing my experience will help me cope with the reality of my illness.”

Based on what’s evident on the blog, it seems likely that the on-line writing probably did help her, personally and individually. But perhaps, even more so, the blog is instructive for others, now. I suspect there’s a lot more I and others might learn from her story and digital afterlife.

With respect

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A Good Place to Find Information on Clinical Trials

If you’re thinking of participating in a clinical trial for cancer or any other medical condition, a good place to find out about the research is ClinicalTrials.gov.

The site, sponsored by the NIH, NLM and FDA, is one outcome of the FDA Modernization Act (FDAMA) of 1997. The database aims to provide information on clinical trials to patients and physicians, and to generally increase transparency on study funding, design and availability of other trials evaluating the same condition or drug.

A mouthful of jargon, as you’ll find regarding pretty much any trial. But better that it’s public –

In recent years, some medical journals have required that clinical investigators seeking to publish study results register their trials, from the start, with the Clinical Trials database. Since 2007, when Congress passed the Food and Drug Administration Amendments Act of that year (US Public Law 110-85) researchers must register and report results for most clinical trials of drugs, biologics, and devices.

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Learning About the Cancer Genome Atlas

A tweet from a former research colleague reminded me about the Cancer Genome Atlas, which I’d been meaning to check out. This website covers a project jointly funded by two NIH institutes: the NCI and the National Human Genome Research Institute (NHGRI). The project is about documenting cancer genetics for many, many human tumors.

Cancer Genome Atlas image

Some basics –

We all have genetic sequences we’re born with: our personal genomes. If you were to get your genome sequenced by a company, like 23andMe, they’d get some DNA from any of your cells or body fluid, and sequence your “somatic” or cellular genome. They would identify variants and mutations that you carry in the DNA of all or most of the cells in your body.

Cancer cells often contain genetic mutations that are not present in the patient’s healthy cells. So an individual’s breast cancer genome, for example, might differ from her baseline, inherited genome.

The purpose of the cancer genome project is to sequence DNA present in tumors samples so that researchers can identify specific, genetically distinct cancer forms and, eventually, develop smarter drugs that take aim at those tumor-specific mutations.

The site offers some cool, public-domain pathology and genetics images through a multimedia library. Good to know –

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A Vitamin Chart From the National Women’s Health Information Center

Lately I’ve been worrying about Kevin’s refusal to eat broccoli, and wondering what exactly is so good about those green bunches of roughage. In browsing the Web for more detailed information on the matter, I found a helpful vitamin chart.

This table comes from the HHS-sponsored National Women’s Health Information Center – a good spot to know of if you’re a woman looking on-line for reliable sources. It’s a bit simple for my taste. In the intro, we’re told there are 13 essential vitamins our bodies need. After some basics on Vitamin A – good for the eyes and skin, as you probably knew already – the chart picks up with a quick review of the essential B vitamins 1,2,3,5,6, 9 and 12 (my favorite), followed by a rundown on Vitamins C, D, E, H (that would be biotin) and K:

Vitamins, Some of their Actions, and Good Food Sources
Vitamin Actions Sources
A
  • Needed for vision
  • Helps your body fight infections
  • Helps keep your skin healthy
Kale, broccoli, spinach, carrots, squash, sweet potatoes, liver, eggs, whole milk, cream, and cheese.
B1
  • Helps your body use carbohydrates for energy
  • Good for your nervous system
Yeasts, ham and other types of pork, liver, peanuts, whole-grain and fortified cereals and breads, and milk.
B2
  • Helps your body use proteins, carbohydrates, and fats
  • Helps keep your skin healthy
Liver, eggs, cheese, milk, leafy green vegetables, peas, navy beans, lima beans, and whole-grain breads.
B3
  • Helps your body use proteins, carbohydrates, and fats
  • Good for your nervous system and skin
Liver, yeast, bran, peanuts, lean red meats, fish, and poultry.
B5
  • Helps your body use carbohydrates and fats
  • Helps your body make red blood cells
Beef, chicken, lobster, milk, eggs, peanuts, peas, beans, lentils, broccoli, yeast, and whole grains.
B6
  • Helps your body use proteins and fats
  • Good for your nervous system
  • Helps your blood carry oxygen
Liver, whole grains, egg yolk, peanuts, bananas, carrots, and yeast.
B9 (folic acid or folate)
  • Helps your body make and maintain new cells
  • Prevents some birth defects
Green leafy vegetables, liver, yeast, beans, peas, oranges, and fortified cereals and grain products.
B12
  • Helps your body make red blood cells
  • Good for your nervous system
Milk, eggs, liver, poultry, clams, sardines, flounder, herring, eggs, blue cheese, cereals, nutritional yeast, and foods fortified with vitamin B12, including cereals, soy-based beverages, and veggie burgers.
C
  • Needed for healthy bones, blood vessels, and skin
Broccoli, green and red peppers, spinach, brussels sprouts, oranges, grapefruits, tomatoes, potatoes, papayas, strawberries, and cabbage.
D
  • Needed for healthy bones
Fish liver oil, milk and cereals fortified with vitamin D. Your body may make enough vitamin D if you are exposed to sunlight for about 5 to 30 minutes at least twice a week.
E
  • Helps prevent cell damage
  • Helps blood flow
  • Helps repair body tissues
Wheat germ oil, fortified cereals, egg yolk, beef liver, fish, milk, vegetable oils, nuts, fruits, peas, beans, broccoli, and spinach.
H (biotin)
  • Helps your body use carbohydrates and fats
  • Needed for growth of many cells
Liver, egg yolk, soy flour, cereals, yeast, peas, beans, nuts, tomatoes, nuts, green leafy vegetables, and milk.
K
  • Helps in blood clotting
  • Helps form bones
Alfalfa, spinach, cabbage, cheese, spinach, broccoli, brussels sprouts, kale, cabbage, tomatoes, plant oils. Your body usually makes all the vitamin K you need.

(from womenshealth.gov, table accessed 2/19/2011)

Overall I’d say the chart is useful, a good place to start if you want to know, say, what’s a good, non-citrus source of Vitamin C. It could be improved by provision of more details, like the precise amount of Vitamin B2 per cupful of Swiss chard, and how preparing foods in distinct ways – like roasting, sautéing, boiling, or serving them raw – affects the nutritional value.

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A Glimpse into the Cochrane Library

I’m taking notes on the Cochrane Library. The site – a collection of databases and reviews – drew my attention yesterday when an embargo was breached for an article to be published there having to do with zinc’s putative power to squelch the common cold.

From the website, published John Wiley & Sons, Ltd.: the Library is put forth by the Cochrane Collaboration, an international group established in 1993. This on-line set includes the Cochrane Database of Systematic Reviews, which so far has published over 4000 papers. The stated aim is to help people make well-informed decisions about human health.

Professor Archibald Leman Cochrane, a health care researcher and pioneering epidemiologist, was born in Scotland in 1909. He attended Cambridge and studied medicine in London. His work was interrupted, extensively. According to the Cochrane site, he served in the International Brigade in the Spanish Civil War and was a captain in the Royal Army Medical Corps during WWII. At one point he was taken as a POW, in Crete. Later on, after a stint studying tuberculosis in Philadelphia, among other endeavors, he became a full Professor at the Welsh National School of Medicine in Cardiff, Wales.

In some countries and Canadian provinces, the Cochrane Library is freely and fully available to anyone with Internet access, based on funding for the collaboration. Here in the U.S., you might view the complete database through a public or university library subscription.

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