By Maggie McGuire
For one December patron of the Rockledge Fitness Center the choice to pursue a healthy, longer life delivered more immediate results than expected. Hit by a heart attack during a workout, the man was saved by the quick thinking of NIH staff and the close proximity of an automated external defibrillator (AED).
“Thanks for saving my life! ... I was very lucky to have this happen in the gym with trained people around,” the survivor wrote in an e-mail to Jewell Webb of NIDA and Peggy Fitzgibbon and Heather Bridge, both of NIAID.
With AEDs available in many public arenas, such as airports and shopping malls, familiarity with the machine and training in cardiopulmonary resuscitation (CPR) are tools of responsible citizenship. The Rockledge incident and another recently at the NIH Executive Boulevard location remind that preparation in cardiac arrest response can mean the difference between life and death.
The NIH Office of Research Services, Division of Occupational Health and Safety’s Occupational Medical Service offers an instructional course multiple times a week, teaching how to properly perform compressions and use the defibrillators. The Clinical Center installed more than 60 AEDS in the Hatfield building in 2006, joining the 33 in the Magnuson building. They are on each level of the new structure at each elevator bank.
Webb had CPR training where she practiced using the AEDs as part of her aerobic instructor certification. On December 15, when a gym-goer collapsed, she, Fitzgibbon, and Bridge performed compressions and gave breaths to the victim while waiting for paramedics to arrive. When their efforts failed to maintain a consistent pulse, the women deployed the defibrillator to shock his heart.
“It was a life-altering experience,” reflected Fitzgibbon.
“I felt pretty proud that I could help,” said Elmore, an NIH contractor.
Webb addressed the concern of some who think they would be too afraid to take action in a crisis, “If the situation presents itself, people will be surprised at what they can do. Take the training and hope you never have to use it.”
While CPR can be effective, in severe cases of cardiac arrest the shock of an AED is necessary to restart a victim’s heart. The defibrillators in the CC are advanced models that show and tell the user how to properly use the machine, said Michael Dunn, automated external defibrillator program manager in the NIH Office of Research Services, Division of Occupational Health and Safety. A visual on the AED instructs users where to place the pads on the chest of the person in cardiac arrest. The defibrillator reads the heart rhythm of the victim; orally reports if a shock is necessary; and, if so, delivers an electric current. After another heart rhythm reading, the machine administers a second shock, if necessary, and tells the user to continue with resuscitation attempts, said Dunn.
Despite efforts to make the process user-friendly, people should still familiarize themselves with the machine before it needs to be used in a crisis, Dunn said.
Practice and learn more in Egebrecht’s course—sign up at http://dohs.ors.od.nih.gov/cpr_training.htm. Dunn’s office trains on-site as requested; call 301-451-3294 for more information.
Informatics lecture series kicks off with data repositories
The Biomedical Translational Research Information System (BTRIS) team hosted the first in a series of lectures on informatics in biomedical and translational research on Jan. 21. Speaker was Michael Kamerick, director of academic research systems and co-director of biomedical informatics at the Clinical and Translational Sciences Institute, University of California, San Francisco. His talk focused on integrated data repositories, large-scale databases containing information from the full array of information systems in a biomedical enterprise. The repositories can be valuable tools for meta-analysis, delivering refined results quickly and securely.
Data contained in the repositories come from clinical and clinical trials systems, life sciences (genomics, proteomics), research, billing, and registries, clinical trial systems and more. Integrated data repositories support a variety of functions, including hypothesis testing, cohort development, genome/phenome matching, genome-wide association studies, development of quality measures, and general population-based studies.
Gathering such data today takes one of two painful approaches, Kamerick said. Review of paper charts can take years. Manual “screen scraping,” transcribing records from an electronic medical record to a spreadsheet, is time consuming and error prone “Along the way, everything private about every individual is exposed to those investigators: name, address, phone number, social security, medical record number,” he said.
“The average time it takes from lab discovery to dissemination in general medical practice of a valuable medical discovery is 17 years,” Kamerick said. “This is just too much time. My immediate focus in building these systems is to take time out of the research cycle.”
The repository he uses, i2b2 (Informatics for Integrating Biology and the Bedside), is an open-source platform developed at Partners HealthCare System through NIH funding. At the January 21 lecture, Kamerick demoed the i2b2 workbench, showing how a researcher’s information can be collected and categorized. Categories include demographics, diagnoses, and lab results, depending on the initial query. This proxy chart review reveals only what the user requests and protects patient privacy, Kamerick said.
“There’s this line from privacy to utility in data, and usually more privacy means less utility and vice versa,” said Kamerick. “So how to get to the point where this is sufficient privacy and sufficient utility so science advances and people still feel protected is the great challenge, and I think that this kind of technology offers the possibility.”
Data quality, stakeholder interests, patient rights to opt out of participation, data ownership by either clinician or institution, and security requirements are other issues that are part of ongoing discussions about integrated data repositories. Each academic institution addresses such issues in its own regard, said Kamerick, and is learning from other’s successes and failures.
Upcoming lectures are—Dr. Adam Wilcox of New York Presbyterian Hospital on March 24; Dr. Henry Lowe of the Stanford University School of Medicine on April 21; Dr. Umberto Tachinardi of the University of Chicago on May 19; Dr. Shawn Murphy of Massachusetts General Hospital on June 16; and Dr. Jim Cimino, chief of the CC's Laboratory for Informatics Development, on September 15.
View Kamerick’s lecture in its entirety at http://btris.nih.gov.
Tanzanian medical facility conducts NIH-funded clinical research
By Jenny Haliski
These are a few scenes from Kilimanjaro Christian Medical Centre (KCMC), a hospital in the small town of Moshi in northern Tanzania near the foot of Mt. Kilimanjaro. KCMC, together with Duke University Medical Center and KIWAKKUKI, a community organization fighting HIV/AIDS, receives NIH funding to conduct clinical research on HIV/AIDS, malaria, tuberculosis, and other infectious diseases.
KCMC, which opened in 1971 through the Good Samaritan Foundation, is a consultant, referral hospital, and patients must pay to create a medical record there. Patients are referred to KCMC from the nearby Mawenzi Regional Hospital, where care is free. Clinical officers come to Mawenzi to recruit patients who qualify for NIH-funded studies. The 450-bed KCMC offers inpatient and outpatient services and often operates at 130 percent capacity, with a daily patient census closer to 600.
The seeds of KCMC’s research collaboration were sown in the 1980s, when Duke partnered with Tanzanian colleagues in Dar es Salaam, where Professor John Shao worked before he moved to Moshi to become KCMC executive director in the mid-1990s. The KCMC/Duke relationship moved with Shao and in 2002 expanded its focus on HIV/AIDS prevention, treatment and care. NIH funding followed and snowballed as grants to develop the site’s infrastructure and capacity, launch an initial HIV voluntary counseling and testing service, and establish training opportunities built on each other.
Dr. John Crump, Duke’s principal investigator at the site, says that although their research focus has been HIV/AIDS and other infectious diseases, it is expanding into other health issues: cervical cancer, cardiovascular disease, and car crash injuries. “I take a long time—decades—to measure progress,” said Crump. “Over that length of time, what staff can we train, what infrastructure can we establish, and what papers can we publish with data that will influence health policies? Our goal is to deliver all aspects of the program into well-equipped Tanzanian hands.”
Currently, there aren’t enough Tanzanian hands ready to take on that challenge. According to Shao, the country’s ratio of physicians to patients is one physician to 23,000 people. Increasing that ratio is one of Tanzania’s, and KCMC’s, major goals. In addition to the hospital, KCMC operates 14 allied health science teaching schools and the Tumaini University Kilimanjaro Christian Medical College. The new medical school building, opened in late 2008, will increase class sizes from 30 to 133 students.
Editor’s note: Haliski, former CCNews editor, was in Moshi last fall and wrote about NIH-funded research there. She’s currently a public affairs specialist in the NIH Office of Communications and Public Liaison.
How to navigate the Mark O. Hatfield Clinical Research Center
Getting Around the Mark O. Hatfield Clinical Research Center
Floors 1, 3, 5, and 7 are for patient care. Floors 2, 4, and 6 house offices and interstitial space (infrastructure) space.
Finding a Room
Genetic disorder affecting sleep pattern explored
By Bill Schmalfeldt
Smith-Magenis syndrome is many times mistaken for something else like Down syndrome. Other times, it is missed completely.
NIH School helps students stay on track
Study of genetic syndrome may reveal pathway to aneurysm formation
By Maggie McGuire
Dr. Harry Dietz covered experimental therapies for a genetic disorder and how those treatments translate to other afflictions in the Astute Clinician Lecture given January 14.
“Marfan Syndrome and Related Disorders: From Molecules to Medicines” was part of the NIH Director’s Wednesday Afternoon Lecture Series.
Marfan syndrome, a disorder of the connective tissue, affects the ocular, skeletal, and cardiovascular systems. Approximately one in 5,000 Americans has the disorder, which commonly presents with overgrowth of bones, dislocation of the ocular lens, and progressive dilatation of the aortic root. Even with state-of-the-art medical management, Dietz said, Marfan syndrome is still associated with early mortality.
“Can we do better?” Dietz asked the crowd gathered in Masur Auditorium.
Dietz is professor of pediatrics, medicine, and molecular biology and genetics at Johns Hopkins University School of Medicine, and investigator at Howard Hughes Medical Institute. He earned his medical degree from SUNY Upstate Schools of Medicine in Syracuse and completed residencies in pediatrics and anesthesia and in critical care medicine at The Johns Hopkins Hospital.
In his Astute Clinician Lecture Dietz presented that Marfan syndrome results from a deficiency of the fibrillin-1 protein—responsible for maintaining elastic fiber integrity in connective tissue. A slide showed a non-affected patient’s elastic fibers densely packed and well organized and a Marfan syndrome patient’s fibers fragmented and in disarray.
Fibrillin is a component of microfibrils. “With a deficiency of microfibrils, as seen in Marfan syndrome, we observed promiscuous activation of transforming growth factor beta (TGFB),” said Dietz. This activation is thought to speed dilatation of the aorta. Marfan mouse models showed significant improvement in aortic wall architecture and thickness when injected with a TGFB-neutralizing antibody or when treated by losartan, an angiotensin II type-1 receptor blocker that both lowers blood pressure and antagonizes TGFB.
A Phase III trial sponsored by NHLBI’s Pediatric Heart Network and The National Marfan Foundation is testing the efficacy of losartan in slowing aortic root growth in Marfan syndrome patients. A preliminary clinical experience in children with severe Marfan syndrome showed a pronounced decline in aortic root growth after starting losartan.
The speaker and his fellow researchers identified a connection between TGFB and Loeys-Dietz syndrome, too. This vascular condition shares many characteristics with Marfan syndrome, including aortic and arterial aneurysms, leading scientists to explore a similar genetic basis. “The emerging view is that transforming growth factor beta may be a final common pathway to aneurysm formation,” Dietz said.
Remarkably, losartan showed the ability to attenuate or prevent manifestations of Marfan syndrome outside of the cardiovascular system in mouse models including developmental emphysema and skeletal muscle myopathy. Dietz and colleagues went on to show that TGFB also contributes to failed muscle regeneration in a mouse model of Duchenne muscular dystrophy and that losartan could reverse this defect, preserving muscle architecture, size, and function.
The Astute Clinician Lecture was established through a gift from the late Dr. Robert W. Miller and his wife, Haruko. It honors a US scientist who has observed an unusual clinical occurrence, and by investigating it, has opened an important new avenue of research.
To view Dietz’s lecture, visit http://videocast.nih.gov/.
Winter’s first snowstorm covers the CC in a sheet of white
The west courtyard’s Healing Waters statue and the Magnuson Building’s B1-level patio saw little action on January 27, as the first real snow of the year left its mark.
The Office of Research Facilities (ORF) and the Office of Research Services released recommendations for avoiding an accident or injury in inclement weather. Drive slowly, and do not be intimidated by other drivers into going faster than you are comfortable with. Maintain a safe distance between your vehicle and the one in front of you.
Note that elevated surfaces (bridges, ramps, the top level of a parking garage) freeze first. If your car begins sliding: take your foot off the gas, steer your vehicle the same direction you are sliding, and gently pump the brake pedal. If your car has anti-lock brakes, use a steady, firm pressure without pumping.
When walking outside in the snow and ice, wear proper footwear. Refrain from walking between parked cars in icy lots, as the shade slows melting. ORF handles pathway and road treatments.
If a sidewalk, roadway, or other surface on the NIH main campus remains hazardous after a crew has visited the area, please report the problem to ORF at 301-435-8000.
NCCAM announces Straus lecture
During visits to China, Nuland observed major surgery done with no anesthesia, aided by acupuncture. In the Straus lecture, he will describe these operations and tell of his experience. In his recent book, The Uncertain Art, Nuland wrote “the basis of acupuncture’s practical usefulness, even in the operating room, has still not been explained in terms acceptable to most orthodox Western scientists using orthodox Western investigative methods.”
Dr. Stephen E. Straus was the first director of NCCAM. “Steve created a legacy we are continuing to build upon,” said Dr. Josephine P. Briggs, NCCAM’s current director. “He advocated for the most rigorous scientific methods to preserve NCCAM’s credibility. A lecture series in his name is only fitting to honor the work of such a brilliant and extraordinary scientist.”
In addition to serving as NCCAM director, Straus was the senior investigator in the Laboratory of Clinical Investigation at NIAID and was also part of the nationwide research team that showed a vaccine was effective in preventing shingles in older adults. He died in May 2007.
Patient Safety Champion Award nominations open
Nominations for the 2009 Patient Safety Champion Award are being accepted through Feb. 23, 2009. To underscore the Clinical Center’s commitment to creating a safe environment for patients and staff, the award is given annually to an individual or team who:
The awardee will be recognized by CC leadership at a luncheon and at the CC Director’s Annual Award Ceremony and will be featured in the CC News. A nomination form was e-mailed to all CC staff. To request another copy or to submit a form, e-mail Laura Lee at firstname.lastname@example.org. Nominations can also be turned in to Deputy Director for Clinical Care Dr. David Henderson’s office (Room 6-1480) c/o Patient Safety Champion Award.
Recycle magazines for patient enjoyment
Don’t pitch your gently read magazines. Recycle them to help brighten the day for Clinical Center patients. Magazines covering a variety of interests are a great resource to help patients pass the time while at the CC for appointments. Drop them off in the red-roofed collection bins located in the elevator lobbies of P2 and P3 parking garages and outside the patient library on the 7th floor of the Hatfield Building. Patient library and Red Cross volunteers collect and sort the magazines, make sure address labels are removed, and distribute them at least weekly to waiting areas in clinics, radiology, and phlebotomy. If you have questions about the Recycled Reads program, call the Patient Library at 301-451-7603.
Save a life, give blood
The NIH Blood Bank current needs A+, B-, and O- blood donations. Typically, the following blood products are needed each month: 600 units of red blood cells to treat patients with chronic anemias; 2,500 units of platelets to control bleeding in patients with leukemia, cancer, or who have had surgery; 100 units of plasma for surgical patients, patients with cancer, and patients with immunologic deficiencies; 20 units of cryoprecipitate for patients with a variety of bleeding disorders; and 10 units of granulocytes (white blood cells) for patients with serious infections associated with hereditary or acquired abnormalities of white blood cells.
Monday appointment hours were recently extended to 6:30 pm; regular hours to donate are 7:30 am to 5:00 pm. The blood bank is located on the CC’s first floor with convenient, reserved parking in MLP-9. To schedule a donation, visit http://www.cc.nih.gov/blooddonor/appointment.html or call 301-496-1048.
Long-time staffer dies
To keep up on the library’s services, subscribe to its e-mail list. Find that information and details on offerings on the library Web site http://nihlibrary.nih.gov. Direct comments or questions to email@example.com or 301-496-1080.
New clinical research protocols
The following clinical research protocols were approved in December:
A Phase I Study of ABT-888 in Combination with Metronomic Cyclophosphamide in Adults with Refractory Solid Tumors and Lymphomas, 09-C-0048, Shivaani Kummar, MD, NCI
A Group Wide Biology and Banking Study for Phase II Study of R1507, 09-C-0054, Lee Helman, MD, NCI
Autologous and Related Allogeneic Hematopoietic Stem Cell Transplant Data Submission to the Center for International Blood and Marrow Transplant Research (CIBMTR) and the National Marrow Donor Program (NMDP), 09-C-0053, Ronald Gress, MD, NCI
Informed Consent in Pediatric Phase I Cancer Trials, 09-C-0052, Elizabeth Fox, MD, NCI
Clinical, Cellular, and Molecular Investigation into Oculocutaneous Albinism, 09-HG-0035, David Adams, MD, PhD, NHGRI
A Phase I Study of the Intrathecal Administration of Resiniferatoxin for Treating Severe Refractory Pain Associated with Advanced Cancer, 09-D-0039, Andrew Mannes, MD, CC
Phase II Study of Metastatic Cancer that Expresses Carcinoembryonic Antigen (CEA) using Lymphodepleting Conditioning Followed by Infusion of Anti-CEA TCR-Gene Engineered Lymphocytes, 09-C-0047, Steven Rosenberg, MD, PhD, NCI
Normal Blood, Bone Marrow, and Buccal Mucosa Protocol, 09-I-0049, Todd Wilson, DO, NIAID
Phase II Study of Metastatic Melanoma Using a Chemoradiation Lymphodepleting Conditioning Regimen Followed by Infusion of Anti-Mart-1 and Anti-gp100 TCR-Gene Engineered Lymphocytes and Peptide Vaccines, 09-C-0051, Steven Rosenberg, MD, PhD, NCI
Pharmacogenomic Response to Thyrotropin-Releasing Hormone Stimulation in Healthy Volunteers: The Influence of a Common Type 2 Deiodinase Genetic Polymorphism on Serum T3, 09-DK-0058, Francesco Celi, MD, NIDDK
A Phase II Study of Bevacizumab in Combination with Ixabepilone in Subjects with Advanced Renal Cell Carcinoma, 09-C-0057, Olivier Rixe, MD, PhD, NCI
Assessment of the Effects of a DPP-4 Inhibitor (Sitagliptin) Januvia on Immune Function in Healthy Individuals, 09-DK-0055, Kristin Tarbell, PhD, NIDDK
Molecular Bases of Response to Copper Treatment in Menkes Disease, Related Phenotypes, and Unexplained Copper Deficiency, 09-CH-0059, Stephen Kaler, MD, NICHD
Collection of Blood and Bone Marrow Samples from Select Patients with CML to Measure Minimal Residual Disease, 09-H-0062, Agnes Yong, MD, PhD, NHLBI
Imaging Cannabinoid CB1 Receptors in Alcohol Dependence, 09-M-0040, Robert Innis, MD, NIMH
February 4, 2009
February 11, 2009
February 18, 2009
February 25, 2009
This page last updated on 12/14/2017