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Clinical Center News

Published monthly for CC employees by Office of Communications, Patient Recruitment, and Public Liaison.

past issues

March 2011


"Let Me Down Easy," a special gathering of the NIH family for one-woman show

ICU transitions to electronic documentation

Local artist inspired to donate painting after sharing NIH connection

Renovations revitalize F-wing

Rare Disease Day recognizes patients, researchers, advocates

NIH program diagnoses CC patients with new disease

Recent publication investigates the role of expectations in health

CC patient finds strength in writing

Patient advocate supports promise of new cancer indicator

Badge enrollment center revises hours

Georgian leaders visit NIH to learn of clinical research training opportunities

News Briefs

New clinical research protocols

Upcoming Lectures


   

"Let Me Down Easy", a special gathering of the NIH family for one-woman show

By Kelli Carrington

Anna Deavere Smith touring the Clinical Center
Anna Deavere Smith toured the Clinical Center before giving a performance of her one-woman show. She spoke with pediatric patient Lindsey Duquette and her brother Matthew in 1NW.
On February 3, the NIH welcomed renowned actress, playwright, professor, and prestigious awards recipient Anna Deavere Smith to a packed house in Masur Auditorium to perform and discuss selected scenes from her critically acclaimed show “Let Me Down Easy.”

Smith, a Baltimore native, performed for NIH staff and Clinical Center patients and visitors at the invitation of NIH Director Dr. Francis S. Collins, who had seen her show at Arena Stage in Washington, DC.

Collins introduced the actress with a story of how he first learned about her through his mother, also a playwright, who served with Smith on a panel in New York years ago. Sharing his mother’s perspective, Collins described Smith as an artist who understands that theater is more than big shows, fireworks, and fancy dance numbers. It is about ideas and language that appeal to one’s spirit.

“Every generation produces a few artists who convey messages that touch us with a sense of awe and wonder, but also touch us in terms of our conscience,” said Collins. “Anna Deavere Smith is one of those treasures of this generation.”

Smith performed several sketches that collectively illustrate some harsh realities about the state of health care, yet invite consideration for the enduring strength of the human spirit in the face of enormous challenge.

Anna Deavere Smith speaking with NIH Director Dr. Frances S. Collins
Anna Deavere Smith spoke with NIH Director Dr. Frances S. Collins about how she has used health care issues to inspire her performances.
In “Toughness” a cowboy has life-threatening injuries from a rodeo accident but less financial worry because he receives full medical coverage through a flat-rate, military-based program. “That Bedrock of Care” presents a meticulous chemotherapy patient in a prominent university hospital who gets news that her medical records have been lost, but promptly found when her professional affiliation to the university is revealed. In “A Heavy Sense of Resignation” a privileged yet benevolent medical fellow learns about the duality of healthcare support for patients in public versus private hospitals in New Orleans after Hurricane Katrina.

Prior to Smith’s performance, she toured the CC with Dr. David Henderson, CC deputy director for clinical care, and conversed about the health care system and the challenges of overcoming the historical research atrocities affecting clinical trial recruitment of African-Americans. On route, Smith met two CC patients: a cancer patient and a pediatric patient with a rare condition. In a conversation, Smith commented on how brave the young patient was and asked where her bravery came from. Her brother who sat next to her pointed to the young girl’s heart.

“She understands the unique nature of the Clinical Center,” said Henderson of Smith after the tour. “She gets it.”

That same youth-filled bravery was shown in Smith’s final vignette titled “Don’t Leave Them in the Dark,” which she called an affirmation for the value of what NIH is doing every day. Here, Smith portrays Trudy Howell, an orphanage caregiver who told a moving story about a brave 12-year-old South African girl with AIDS. The little girl’s journey ends with a spiritual visit by her deceased mother who warmly tells her “It’s time to pack your things,” as if the two are destined to reunite.

Following her performance, Collins engaged Smith in a conversation about her craft of impressionism, as well as the inspiration behind her show and the years of preparation, including interviews with people across the health-care spectrum in the United States and abroad. Her trip to Rwanda, a decade after the 1994 genocide, offered a genuine example of the human spirit she portrayed throughout her show, “People wanted to give the story of their tragedy,” she said. “They were so invested in making themselves and everything else better.”

Her hope for the play, as it finishes its run in Washington, DC, and now begins touring the country, is for the human side of the health-care debate to be revealed. Smith feels that this is an important debate to have, and she hopes the play will inspire community leaders to take a major role in bringing people from both sides of the aisle together to work it out.

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ICU transitions to electronic documentation

The team celebrates with cake

Intensive Care Unit electronic documentation team

The 3SW intensive care unit (ICU) began a transition to electronic documentation of patient medical records to streamline clinical documentation, increase efficiency, and improve patient safety.

The electronic documentation system replaced a hard copy paper flow sheet that has been used in the ICU for decades, said Dr. David Henderson, Clinical Center deputy director for clinical care.

Henderson reported that one of the main goals of this transition is to increase the quality, efficiency, and safety of patient care. “The clinical data viewer in the ICU populates information automatically, eliminating the potential for human error,” he said.

The new system will be accessible through the Clinical Research Information System (CRIS) and will mimic the format of the flow charts while streamlining the documentation in a single location. This new patient-care technology records and calculates virtually every electronic observation made of a patient’s condition and vital signs, so that ICU staff do not need to record or calculate the information manually.

Group photo of the team

Intensive Care Unit electronic documentation team

Ryan Kennedy, an information technology project manager for the Department of Clinical Research Informatics, coordinated and implemented this customized electronic documentation initiative. “We wanted to make it easier for nurses to document patient information while developing a way to display this information in an easier way for the physician group,” he said.

Previously, when patients were admitted to the ICU, the information associated with their condition was recorded on the paper flow sheet and there was not electronic data available to investigators at the point in which their patient’s condition was most critical. “Physicians used to have to physically go up to the ICU, go to the bed, and look at a paper flow sheet to see what was going on. Now investigators who have patients in the ICU can see the clinical data viewer in their offices or from home,” said Kennedy.

Henderson reported that in addition to increasing efficiency and patient safety in the ICU, the system will also allow investigators access to important information that benefits clinical research initiatives. “All the data that is collected on these patients was never entered into the clinical research documentation in the past,” he said. The new system gives researchers the opportunity to easily access and utilize patient information collected while in the ICU.

This long-term project was developed after receiving feedback from Nursing, Critical Care Medicine Department staff, and other CC staff members who care for or see patients in the ICU. “We have already had nurses say that the new electronic flow sheets are easier to use and speeds up the ability to enter information,” said Kennedy. “I am interested to see what else we can do with this system.”

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Local artist inspired to donate painting after sharing NIH connection

Carol Brown Goldberg and the painting she donated
Local artist Carol Brown Goldberg donated the painting pictured above titled “If You Believe, You Get First Choice,” to the CC this February. It hangs on the seventh floor of the Hatfield building.

Artist Carol Brown Goldberg understands the importance of art in an environment dedicated to healing and medicine. “I think it is the most important place to put art,” she said.

Goldberg donated her painting “If You Believe, You Get First Choice” to the Clinical Center in February.

Goldberg’s decision was motivated by a chance meeting with the parent of a former CC patient, who approached her at an exhibit of Goldberg’s artwork in December. Goldberg recalls feeling moved as the woman spoke of the time she spent at the CC praying for her son who was battling cancer.

“She said she wished she had been able to see that painting,” Goldberg said, “that maybe it would have helped her and given her a sense of optimism.”

Goldberg herself spent a significant amount of time at the CC in 1979 when her son underwent successful open heart surgery here. After her recent coincidental encounter with a fellow mother and caregiver, she decided to donate the painting.

“I was profoundly inspired by that conversation,” she said. “We are both so fortunate that our sons are healthy. The NIH and art brought us together quite serendipitously.”

Goldberg has been exhibiting in Washington, DC since 1975. Her work has been inspired by science, the brain, and physics, and she has been exploring the relationship between art and science for many years in a variety of mediums.

Her painting “If You Believe, You Get First Choice” hangs in the Hatfield Building seventh floor bridge.

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Renovations revitalize F-wing

Renovations have begun on the Clinical Center F-wing. The project will revitalize 215,000 square feet of former patient-care space into laboratories and lab support and administrative areas. The construction will take part of the original Magnuson Building down to its bare foundation.

“The building is 60 years old. Most things are just plain worn out,” said Wayne Appenzellar, project officer with the NIH Office of Research Facilities, who gave a presentation on the renovations January 25 in Lipsett Amphitheater.

Phase A of the construction includes two full floors to be occupied by the National Cancer Institute’s anatomical pathology lab, which also serves other institute and center’s protocols. The new autopsy laboratory is designed to be more stringent than a biosafety level (BSL) 2 lab. Phase A occupancy is targeted for fall of 2012.

The first push will also install the utility infrastructure for the entire wing, fit out space on floors two through five, and work on mechanical areas on floors four and 14. Phase B will move on to the space on floors six through 13, the north corridors on floors two to five, and mechanical areas on nine and 13. Phase B areas are expected to be occupied in spring 2015.

Some areas of each floor are flexible, and occupants selected their use and arrangement from a variety of options. Floors are designed in an open laboratory concept.

Decisions on the renovations and process are made by an executive steering committee formed under the NIH Space Recommendations Board and Facilities Working Group. Funds for this project came from the American Recovery and Reinvestment Act of 2009.

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Rare Disease Day recognizes patients, researchers, advocates

Stuffed animal horses and zebras

Doctors are taught to think horses when they hear hoof beats (as in, go with the obvious), but rare diseases are the zebras.


An attendee browses the OCPRPL table

The Office of Communications, Patient Recruitment, and Public Liaison offered tips on searching for available trials.


As one patient advocate at Rare Disease Day at NIH on February 28 put it, alone they are rare, but together they share a common bond: hope.

Advocates, researchers, and those affected by some of the 7,000 rare diseases identified in the United States gathered at the Clinical Center to celebrate and recognize accomplishments and research highlights.

The first Rare Disease Day at NIH—in connection with the fourth annual international event—was sponsored by the NIH Office of Rare Diseases Research and the CC. Rare Disease Day was established to raise awareness about rare diseases, the challenges they present, and the importance of research to develop diagnostics and treatments.

Dr. Stephen Groft, director of ORDR, kicked things off and introduced two large stuffed animals sharing the stage with him. Doctors are taught “if you hear hoof beats, don’t think zebras—the rare diseases—but instead, think horses—the common diseases,” Groft said. “Today, let’s think zebras.”

Rare diseases affect about 18 to 25 million people in the United States each year, an estimated 6 to 8 percent of the population. “I think as we go forward we’ll see more and more diseases under the rare diseases umbrella,” Groft said.

Some mentioned throughout the day were chronic granulomatous disease, an immunodeficiency genetic disorder; and kidney cancer, which affected a college athlete’s father, inspiring him to start the rare disease advocacy group Uplifting Athletes. Dr. Francis S. Collins, NIH director, spoke about research into progeria—a disease with symptoms that resemble human aging but occurs in young children.

CC Director Dr. John I. Gallin mentioned the Cures Acceleration Network authorized in the Patient Protection and Affordability Act and discussed the role drug repurposing (finding new applications for approved medications) can play in speeding the process from drug target to Food and Drug Administration approval.

The CC’s unique resources, such as the Pharmaceutical Development Section that formulates drugs to investigate some drug repurposing, make it an important component in the Cures Acceleration Network.

“In the future, I see the Clinical Center as a resource to enable clinical research not only on this campus but more broadly,” Gallin said.

Other presenters of the day included representatives from advocacy groups the Global Genes Project and the National Organization for Rare Diseases; Dr. Christine Mueller of the FDA; and researchers from the NIH Bedside-to-Bench Awards program, which funds translational research partnerships between intramural and extramural investigators.

An archived video of the event is available on http://videocast.nih.gov

Nicole Boice and CC Director Dr. John I. Gallin Scott Shirley, Drs. Francis S. Collins, and Steve Groft Dr. Christine Mueller

Nicole Boice, founder of the Children’s R.A.R.E. Disease Network and the Global Genes Project, presented CC Director Dr. John I. Gallin with a “TREATABLE” t-shirt supporting rare disease patients.


Scott Shirley (left), executive director of Uplifting Athletes, a nonprofit that aligns college football players with the cause of rare diseases, pinned Drs. Francis S. Collins (middle), NIH director, and Steve Groft, ORDR director, for their efforts to support rare disease research.


Dr. Christine Mueller of the FDA Office of Orphan Products Development spoke about the fundamentals of orphan drugs, which may treat rare diseases but commercial companies don’t find profitable to manufacture.

 

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NIH program diagnoses CC patients with new disease

Sisters Paula Allen (left) and Louise Benge

Sisters Paula Allen (left) and Louise Benge were two of the first patients seen in the Undiagnosed Diseases Program. Researchers described the genetic cause of their arterial calcification disorder for the first time in a paper published February 3 in the New England Journal of Medicine.


Presentation of patients seen at the Clinical Center in the NIH Undiagnosed Diseases Program (UDP) has led researchers to describe a new rare and debilitating disorder of the blood vessels and its genetic cause.

The adult-onset condition is associated with progressive and painful calcium build-up in arteries below the waist and in the joints of patient’s hands and feet. The new disease finding was published February 3 in the New England Journal of Medicine.

Researchers refer to the condition as ACDC, or arterial calcification due deficiency of CD73. Although symptoms of the disorder include leg and joint discomfort, medical evaluations of the patients ruled out rheumatoid arthritis or other joint-related problems. Genetic analyses performed by NIH researchers suggested a novel disorder and pinpointed the cause of the condition as mutations, or variants, in the NT5E gene.

Such a finding could have implications for treatment of ACDC as well as for the understanding and the development of therapies for more common diseases.

“I’m excited by the fact that they might find something to help us or to help someone else,” said Paula Allen, one of the ACDC patients in the UDP. She and her sister, Louise Benge, participated in a teleconference February 1 announcing the discovery of their disorder.

The UDP program, launched in May 2008, is an initiative jointly led by the National Human Genome Research Institute, the CC, and the NIH Office of Rare Diseases Research. The program receives referrals from around the country when cases challenge the medical community at large. Patients visit the CC for extensive medical diagnostic testing and evaluation.

A knee X-ray
A knee X-ray of a CC patient with ACDC reveals calcification in the main artery supplying blood to the lower leg. Such an abnormal occurrence causes pain and restricts mobility.

“When we first announced the Undiagnosed Diseases Program, we had two goals: to provide hope for patients whose diseases had eluded diagnosis and to conduct fundamental medical research on the causes of diseases,” said Dr. William Gahl, director of the UDP. “From the start, we expected that this pursuit might lead to the discovery of new diseases and of variations of known diseases.”

Researchers saw members of two families with ACDC, and identified a third case outside the country. Seven medical cases like those described in this study have been reported in medical journals over the past century, but these previous studies did not include any insights about the molecular basis of the disorder.

The patients seen at the CC experienced pain and cramping in the calves, thighs, buttocks, and feet due to poor circulation. MRIs and X-rays showed calcium deposits in artery walls.

In the case of Allen and Benge, two of five affected siblings, clinical researchers suspected a recessive inheritance, in which offspring receive two copies of a gene variant — one from each parent — that produces disease symptoms only when combined. The researchers analyzed DNA from all members of the family and found regions where the siblings’ DNA contained two copies of a particular DNA segment compared to their parents’ DNA, which contained just a single copy.

The comparison revealed one such region, which the researchers then analyzed for variants not present in a population of 200 unaffected people. The siblings all had the same variant in a gene called NT5E. This gene normally makes the extracellular protein CD73, which produces a small molecule, adenosine, which protects the arteries from calcifying. The researchers also detected variants in NT5E in all the other affected patients in the study.

“The diagnosis of this faulty gene is the first molecular description of this disorder,” said Dr. Manfred Boehm, lead senior author and NHLBI investigator. “In addition to providing insight for this unique patient group and their physicians, the study has placed this condition among disorders it resembles, adding to our knowledge of vascular biology.”

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Recent publication investigates the role of expectations in health

By: Wendy Schubert

A recent paper published by Clinical Center Bioethics Department staff members in the journal Current Opinions in Psychiatry examined laboratory and clinical studies of the placebo effect, and whether or not an individual’s expectations can shape clinical outcomes in research.

The paper was written by Dr. Luana Colloca of the National Institute of Complementary and Alternative Medicine and the CC Bioethics Department, and Dr. Frank Miller, a senior bioethicist at the CC. The study, titled “Role of expectations in health,” looked at the often-observed effect that patients’ expectations of treatment can relieve their symptoms, even if they did not receive “real” treatment. The evaluation focused on psychiatric disorders and concluded that placebo effects are likely to be an important factor in treatment and have the potential to promote wellness, improve health, and ultimately benefit patient care.

CCNews asked the authors to explain more about the importance of their work:

Why placebos matter
According to the authors, the placebo phenomenon is receiving growing attention. In order to investigate how the placebo effect works, the authors looked at placebo responses in psychiatric disorders to illustrate the complex connections between expectations and treatments as well as between provider-patient relationships and clinical outcomes. Specifically, the authors wanted to explore two questions: first, can expectations shape clinical outcomes in mental illnesses—what kind of evidence comes from laboratory and clinical research? And second, how can expectations be harnessed to contribute in real ways to outcomes?

Surprising result
The gap between the basic science behind placebo effects and its application in clinical practice surprised the authors. For example, without clear definitions of expectations, assessing expectation-related results in clinical trials becomes difficult. A better understanding of expectations and how they form placebo effects may not only help plan future placebo research, it may also help researchers design better and more informative clinical studies. Ultimately, this holds benefits for patient care.

Take-home message
Both drug and non-drug treatments can be enhanced or reversed by health-related expectations. Health-care professionals should be aware that response expectations, the psychosocial context, and their interactions with patients may facilitate therapeutic outcomes.

The authors stressed that expectation and placebo responses are not necessarily related to giving inert substances. The placebo effect has been observed not only when patients received non-drug placebos but also when they received real medications. For example, they found studies showing that when patients have higher expectations of treatment, the treatment works better. More research into the placebo effect may reveal how patient expectations can be used to help achieve better symptom management.

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CC patient finds strength in writing

Rodolfo Martè

CC patient Rodolfo Martè began writing after being diagnosed with myelodysplastic syndrome.


Thousands of miles away from his home and family in the Dominican Republic, Clinical Center patient Rodolfo Garcia Martè has found strength in the written word.

“I was thinking about other patients who have been affected in the same way and suffer from the same disease that I have,” he said. “In the beginning, this whole experience was very new to me, very strange. I didn’t know anything about this, but now I’ve learned a lot, and it has motivated me to tell my story.”

Martè has myelodysplastic syndrome, a serious bone marrow failure illness. The bone marrow of individuals with MDS can still make some blood cells, though very few of these cells are released into the blood for use in the body. Therefore, patients with MDS often need transfusions of red blood cells for anemia, and platelet transfusions for low platelet counts.

“After I got sick, my life changed. But it was more for good than for bad because I feel happy even with what I have,” he said. Part of Martè’s inspiration to write came from conversations he had with friends and family after his diagnosis.

“Whenever I talk to my family or my friends, they ask me, ‘When will they do your surgery?’ And I always say a bone marrow transplant is not an operation. They don’t know anything about the process … so I started writing,” he said with a shrug and a shy smile.

Martè says that he is writing everything he can recollect, the good and the bad. After his appointments he types up his experiences, and even carries the 80 pages or so he has already written on a flash drive in his pocket. Martè hopes to have his book published one day, so he can share his story with his loved ones and others with illnesses similar to his.

Martè was referred to the CC by his physician in Santo Domingo. He has been receiving treatment and a new immunosuppressive drug in a National Heart, Lung, and Blood Institute clinical trial since April 2010. He is staying with friends in the Washington, DC area—a city he calls “incredible” but is far from his wife and daughter. Being away from them is the hardest part, Martè said.

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Patient advocate supports promise of new cancer indicator

Clinical Center patient Matt Capogreco is fighting two rare types of adrenal cancer known as pheochromocytoma and paraganglioma on multiple battle fields—as a patient, as an advocate, and as a research participant.

The first battle he had to fight was with his doctors. “My doctor pretty much said that there was no way I had this, that I was too young,” he said. “Unfortunately there are a lot of misnomers out there because it has a rare label, but a disease isn’t rare when you have it.” After insisting on additional testing due to a family history of tumors, Capogreco was diagnosed with bi-lateral carotid paragangliomas at the age of 25.

Capogreco has been receiving surgical treatment from a team of National Institute of Child Health and Human Development researchers since he was referred to the CC in 2007. He was involved in a recent study that discovered a protein known as CPE-delta N. According to the study’s investigators, by testing the protein’s genetic material in tumors and surrounding tissue, they have discovered a reliable indicator that can help determine if these types of cancer will spread.

The study’s findings, which appear in the Journal of Clinical Investigation, raise long-term possibilities of new tests to gauge the likelihood that a cancer will spread as well as a guide for individualizing cancer care to improve outcome in the future.

Although he was not one of the study participants with the protein, Capogreco was happy to connect with these researchers. “Once I started getting involved in the study and I saw the kind of passion and attention they were giving to this disease, I knew it was a good match for me,” he said. “Anytime you can give back while you are receiving care is essential, especially when you are dealing with a disease you know little about yourself, which must mean there are a lot of other people in the same boat.”

The researchers found that when the level of CPE delta-N protein in tumors was high compared to surrounding tissue, the cancer was highly likely to return, or metastasize within two years. When the level of the protein was low, the cancer was much less likely to recur. Using this threshold measure, the researchers accurately predicted metastasis or recurrence in more than 90 percent of cases evaluated.

Even though Capogreco does not have the CPE-delta N protein, he is in a position to help advance support research on these cancers as a leader within the community of patients, caregivers, and family members of individuals diagnosed with pheochromocytoma and paraganglioma. Capogreco is a founding member of the Pheo Para Troopers, a patient-run organization that empowers and supports patients through knowledge, a sense of community, and advocacy while sponsoring key initiatives in data collection, treatment, and care for individuals diagnosed with these closely related types of cancer.

The Pheo Para Troopers translate the responsibility and camaraderie of military paratroopers to their efforts to fight their cancers and their goal of uniting patients, family members, and caregivers. The group wants those diagnosed with these diseases to understand that they are in a battle together, a battle that Capogreco believes they can win. “They will eventually find a cure, and we want to be part of that cure,” he said.

Capogreco and fellow founders and board members Allen Wilson, Amy Pitzer, and Laura Becktel started the group after recognizing the need for a patient-run group that would facilitate patient communication, supply important information and collect and analyze important data from pheochromocytoma and paraganglioma patients.

The Pheo Para Troopers provide information to community members about clinical trials, including the studies being conducted at the CC, and are currently working on developing a database of pheochromocytoma and paraganglioma patients to help support research efforts in the future.

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Badge enrollment center revises hours

The enrollment center in the Clinical Center South Lobby (Room 1C52) has reduced its hours of operation. HHS identification badge enrollment appointments are available Monday, Wednesday, and Friday. Tuesday and Thursday enrollment appointments are no longer offered at this location. It is still possible to make badge issuance appointments Monday- Friday at the CC badging center at the same location.

Enrollment Center (to be fingerprinted and photographed)
Location: CC South Lobby, Room 1C52
Hours of Operation: MWF 8am-4pm
To schedule an appointment:
301-496-0051 or
orspersonnelsecurity@mail.nih.gov  

Badging Center (to pick up the new HHS identification badge)
Location: CC South Lobby, Room 1C52
Hours of Operation: MTWTF, 8am-4pm
To schedule an appointment:
301-451-4766 or
orspersonnelsecurity@mail.nih.gov

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Georgian leaders visit NIH to learn of clinical research training opportunities

Dr. Frederick P. Ognibene, Andrew Urushadze, Mikheil Dolidze

Dr. Frederick P. Ognibene (left), Andrew Urushadze (middle), and Mikheil Dolidze, deputy minister


Health officials from the country of Georgia visited the Clinical Center on January 31 while in the area for the first US-Georgian health conference, Georgian Health Care 2020: MEDEA 2011.

Dr. Frederick P. Ognibene (left), CC deputy director for educational affairs and strategic partnerships, led a tour for Andrew Urushadze (middle), Georgian minister of health and social development, and Mikheil Dolidze, deputy minister.

The country is interested in clinical research training and boosting their collaborations with US researchers. The visiting officials’ tour included the 1NW pediatric patient unit, as maternal and child health is a primary clinical research interest of theirs.

 

 

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March News Briefs

Best-selling author Rebecca Skloot to present lecture
Rebecca Skloot, an award-winning science writer and author of the bestselling book, “The Immortal Life of Henrietta Lacks,” will present the annual J. Edward Rall Cultural Lecture from 10-11 am on March 14 in Masur Auditorium. This event is part of the NIH Director’s Wednesday Afternoon Lecture Series.

Her debut book became an instant New York Times bestseller. It won the Chicago Tribune Heartland Prize and the Wellcome Trust Book Prize, and was named Best Book of the year for 2010 by Amazon.com, and a Best Book of the Year by Entertainment Weekly; O, The Oprah Magazine; and numerous others. It is being translated into more than 20 languages and adapted into a young adult book, and an HBO film.

Seating is first come, first served.

Contact Sarah Freeman at 301-594-6747 or sarah.freeman@nih.gov with questions.

Neuro-oncology provides support to patients and caregivers
The diagnosis of a brain tumor elicits many different and sometimes difficult emotions, not only for the patient, but also for members of the patient’s family.

To help patients and their caregivers cope, the National Cancer Institute’s neuro-oncology branch (NOB) has expanded their emotional support services to include a combined patient/caregiver group, a caregiver-only group, and a patient-only group.

The NOB Brain Tumor Support Group provides an environment and an opportunity for patients, families, and friends to express their feelings and learn new ways to manage all aspects of this disease.

Each group meets monthly. Neuro-oncology branch patients who are interested in joining a group can contact Nancy Garren at 301-496-6380, or garrenn@mail.nih.gov for more information.

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New clinical research protocols 

The following new clinical research protocols were approved in January:

  • Phase II Trial of Cyclosporine Inhalation Solution (CIS) in Lung Transplant and Hematopoietic Stem Cell Transplant Recipients for Treatment of Bronchiolitis Obliterans; 11-CC-0068; Dr. Nicole J. Gormley; CC
  • Prospective Randomized Trial Comparing Navigation with Xperguide vs. Conventional Methods During Percutaneous Image Guided Procedures; 11-CC-0082; Dr. Nadine Abi-Jaoudeh; CC
  • Beyond Intuition: Quantifying and Understanding the Signs and Symptoms of Fever; 11-CC-0083; Dr. Nancy Ames; CC
  • A Phase 1 Study of AZD6244 in Combination with Cetuximab in Refractory Solid Tumors; 11-C-0075; Dr. Austin G. Duffy; NCI
  • A Phase I Study of NK Cell Infusion Following Allogeneic Peripheral Blood Stem Cell Transplantation from Related or Matched Unrelated Donors in Pediatric Patients with Solid Tumors and Leukemias; 11-C-0073; Dr. Kristin Baird; NCI
  • (11C)N-Desmethyl-Loperamide as a Marker of P-Glycoprotein Function in Patients with Gliomas; 11-C-0081; Dr. Teri N. Kreisl; NCI
  • Real-Time MRI Right Heart Catheterization Using Passive Catheters; 11-H-0091; Dr. Robert J. Lederman; NHLBI
  • Effects of Systemically Administered Hydrocortisone on the Human Immunome in Healthy Volunteers; 11-H-0092; Dr. Matthew J. Olnes; NHLBI
  • Environmental Risk Factors for the Anti-Synthetase Syndrome; 11-E-0072; Dr. Frederick W. Miller; NIEHS
  • A Placebo-Controlled Trial of Intravenous Immunoglobulin (IVIG) for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections); 11-M-0058; Dr. Susan E. Swedo; NIMH
  • A Phase II Clinical Trial of PRX-00023 Therapy in Localization-Related Epilepsy; 11-N-0039; Dr. William H. Theodore; NINDS
  • Safety and Efficacy of Intravenous Norepinephrine for Orthostatic Hypotension; 11-N-0085; Dr. David S. Goldstein; NINDS
  • Evaluation and Diagnosis of Potential Research Subjects with Traumatic Brain Injury (TBI); 11-NR-0084; Dr. Raymond A. Dionne; NINR

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Upcoming Lectures

All will be videocast at http://videocast.nih.gov

March 2
Translating Cancer Vaccines from the Laboratory to the Clinic
Jeffrey Schlom, PhD
Chief, Laboratory of Tumor Immunology and Biology, Center for Cancer Research, NCI

Ravi Madan, MD
Assistant Clinical Investigator, Medical Oncology Branch and the Laboratory of Tumor Immunology and Biology, Center for Cancer Research, NCI

March 9
Contemporary Clinical Medicine: Great Teachers
Predicting the Future: Can We Predict Who Will Develop Cardiovascular Events?

Philip Greenland, MD,
Harry W. Dingman Professor and Senior Associate Dean for Clinical and Translational Research, Feinberg School of Medicine, and Director, Clinical and Translational Sciences Institute, Northwestern University

March 16
Advances in Gene Therapy for Inherited Immunodeficiencies

Fabio Candotti, MD
Head, Disorders of Immunity Section, Genetics and Molecular Biology Branch, NHGRI

The Two Faces of Congenital Adrenal Hyperplasia: A Rare Disease, But a Common Condition
Deborah P. Merke, MD, MS
Chief, Pediatric Consult Service, CC
Clinical Investigator, Program in Developmental Endocrinology and Genetics, NICHD

March 23
PARP Inhibitors: How Successful Have We Been in Modulating DNA Damage?

Shivaani Kummar, MD
Head, Early Clinical Trials Development, Office of the Director, Division of Cancer Treatment and Diagnosis, NCI

The Evolving Role of PARP Inhibitors in Breast and Ovarian Cancers
Elise C. Kohn, MD
Head, Medical Ovarian Cancer Clinic, and Head, Molecular Signaling Section, Medical Oncology Branch, Center for Cancer Research, NCI

March 30
Main Results of the Action to Control Cardiovascular Disease (ACCORD) Trial in Type 2 Diabetes

Denise Simons-Morton, MD, PhD
Director, Division for the Application of Research Discoveries, NHLBI

Results of ACCORD Medical Therapies on Diabetic Retinopathy
Emily Y. Chew, MD
Chief, Clinical Trials Branch, and Deputy Director, Division of Epidemiology and Clinical Applications, NEI

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Clinical Center News, National Institutes of Health, Building 10, 10 Center Drive, Room 12C440, Bethesda, MD 20892-1504. Tel: 301-496-6787. Fax: 301-402-2984. Published monthly for CC employees by the Office of Communications, Patient Recruitment, and Public Liaison. News, article ideas, calendar events, letters, and photographs are welcome.

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This page last reviewed on 05/21/12



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