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Published monthly for CC employees by Clinical
from CC assist Kosovar refugees
CC patient Heide Rodriguez (center) chats with a patient at another
hospital via Starbright World's videoconferencing feature. A
small camera, visible just underneath the computer's monitor,
enables Heide and her long-distance friend to see each other
while they talk. Dr. James Taylor, of NCI's pediatric oncology
branch, and friend Lakeisha Grant look on.
Starbright World debuts at Clinical Center
In a world where pain and fear are real, a world where disease
is as much a reality as the sun, all of us can use a little escape
now and then. But for children in a hospital, how do they escape?
The Starbright Foundation and the persistence of NCI's Dr.
Lori Wiener have made it a little easier for the children of
the CC to escape -- to Starbright World.
Starbright World is a private, interactive computer network
specially designed for hospitalized children and teenagers. It
is a place where children with serious and chronic medical conditions
can interact with a community of peers from across the nation,
helping each other cope with the day-to-day realities of life
Steven Spielberg, Academy Award-winning filmmaker and chairman
of the Starbright Foundation, envisioned this escape for kids,
hoping to create a virtual play haven and tool for children to
cope with serious or chronic illness.
"Maybe it's just for an hour during the day, but for
that hour, kids can escape from their pain and their reality
to a place where they can make anything happen," said Spielberg.
"They are in total control, and we can give them a place
where their imaginations can run free."
Dr. Wiener, coordinator of the pediatric HIV psychosocial
support program and of Starbright World here at the CC, was asked
to review grant proposals analyzing Starbright World and its
effects on children. She was able to use her existing knowledge
of the program and her relationship with the Starbright World
staff to bring the program to the Clinical Center.
She also credits the support of CC Director Dr. John Gallin
and NCI Deputy Director Dr. Al Rabson as crucial to making the
"The Starbright World has already brightened the world
for the Clinical Center's youngest participants in clinical research,"
said Dr. Gallin. "We are fortunate to have the opportunity
to take part in this visionary project, and our goal is to make
the experience available to as many of our young patients as
There are currently four operational Starbright World computer
units in the CC, with hopes of getting more in the future. They
are located in the 9th floor playroom, on the 14th floor, and
two on the 13th floor.
"Starbright World provides the children with a distraction
to what they are experiencing in clinic," said Dr. Wiener.
"It also provides them with entertainment and an opportunity
to be able to connect with other children who have, or don't
have, the same illness.
"It gives them the opportunity to share concerns, worries,
fears, hopes, and dreams with others who are also hospital-based,"
she said. "And it gives them a chance to have fun, reach
out, and be creative in a very safe atmosphere."
It is an escape.
"I played the games. The games are fun, really fun,"
said Heide Rodriguez, 19, who enjoys Starbright World during
her visits to the CC. "It really gets your mind off things."
The graphically stimulating games are but one of the many
features of this program. It also allows children to enjoy videoconferencing,
specialized chat rooms, private e-mail, medical bulletin boards,
and interactive multimedia programs that help explain common
Mary Jane Booth, 11, is another patient of the Clinical Center
who plays in Starbright World. Like many other pediatric patients,
her days are often filled with medical tests, appointments, and
Starbright World has not only created a new world for Mary
Jane to click into while at the CC, but has allowed her to be
a friend to patients in other hospitals and share her compassion
and experience with them.
Through videoconferencing, Mary Jane is able to communicate
with a boy who is in a Pennsylvania hospital. He was preparing
to go through a bone marrow transplant procedure and was scared.
Though distance was between them, Mary Jane was able to offer
"I told him, 'There's nothing to be afraid of. Everything
will be alright,'" she said.
Dr. Wiener and the staff involved with Starbright World
hope to help as many children as possible enter Starbright World.
She is also studying the effects of the program on hospitalized
children here and seeks to enroll 30 children in the study. Contact
Dr. Wiener or Nataliya Lomakina at 6-3062 for further information
about the study or Starbright World.
- by Bonnie Flock
Dr. Philip Brunell receives the first vaccination at the NIH
site for the shingles prevention study, from nurse Patricia Hohman.
Shingles vaccine trial enters phase III at CC
The 11th floor day hospital was host to history on Thursday,
June 17, when Dr. Philip Brunell of NIAID rolled up his sleeve
to become the first to be immunized with an experimental vaccine
to prevent shingles.
"I've been working on this problem for about 40 years,"
said Dr. Brunell, an internationally renowned pediatrician and
expert on the varicella-zoster virus, the virus that causes chickenpox.
"I have a very personal interest in this because zoster
is much more common in older Americans and I include myself amongst
them. With the hope that this vaccine will prevent or modify
shingles, I am going to be the first to roll up my sleeve here
at the NIH and get this vaccine."
Herpes zoster, commonly known as shingles, strikes about 500,000
.Americans every year. Caused by the same virus that causes chickenpox,
it is characterized by a rash or blisters and extreme pain.
The clinical trial has progressed successfully and, with the
immunization of Dr. Brunell, has entered phase III. This advanced
stage of trial will further test the vaccine's safety and verify
its ability to prevent the disease.
"This is an infection that occurs mostly in older Americans
and, as our population ages, the likelihood that we will get
shingles also increases," said Dr. Stephen Straus, chief
of the laboratory of clinical investigation at NIAID.
Overall, people have a 20 percent chance of developing shingles
in their lifetime. After a bout of chickenpox, the virus lies
dormant in nerve tissue. The virus may reactivate, causing shingles
later in life.
"We believe that by boosting the body's immune response
with this vaccine, mimicking a naturally occurring case of zoster,
shingles and post-herpetic neuralgia may be prevented,"
said Dr. Norberto Emilio Soto, principal investigator on the
The CC is one of 22 sites across the United States participating
in this large-scale study, which allows all eligible Americans
to participate (see below).
The trial is unique in size. The research team hopes to vaccinate
a total of 37,000 healthy people over age 60 at the sites, with
the goal of preventing shingles through this vaccination. Locally,
the CC hopes to recruit 1,800 volunteers.
"I think this is the largest vaccine study ever mounted
in the United States," said Dr. Straus. "I think this
is the largest study for the prevention of infectious disease
ever done, and it's one of the largest studies ever done for
the older population."
Irvin Cohen, a shingles sufferer, looked on as Dr. Brunell
"I must say, I wouldn't wish the incident of shingles
on my worst enemy because for the better part of two weeks, I
was absolutely miserable," he said. "The discomfort
is so intense at times that you almost wish that you don't wake
up in the morning, and anything that can be done to mitigate
that is certainly going to be appreciated, especially by the
The NIAID experimental shingles vaccine research team is looking
for healthy adults, ages 60 and over who have had chickenpox
and never had shingles. Study participants will be required to
make one outpatient visit to the CC, followed by monthly phone
calls via a toll-free number for up to 5 years.
"We have assembled here at NIH a wonderful team of physicians
and nurses who will be carrying out the study, and the success
now depends on people over age 60 joining us and participating
in this simple study," said Dr. Straus.
For more information about the study, please call the Clinical
Center Patient Recruitment and Public Liaison Office at 1-800-411-1222.
- by Bonnie Flock
All are invited to a presentation on shingles, July 22, from
noon to 1 p.m., in Bldg. 10, Room 11N235 (Sheldon M. Wolff Conference
Room). It will feature an expert speaker on shingles, a slide
show, an open discussion, information to share with friends and
family, and an opportunity to sign up for the Shingles Prevention
The study seeks people who are age 60 or older, have had chickenpox
and are in good general health--for example, do not have cancer,
immune deficiency, or depressed immunity, and have never had
Shingles is most common in people over 50 and affects about
2 in every 10 persons in their lifetime. Anyone who has had chickenpox
is at risk for developing shingles. Compli-cations can include
affects on hearing and vision, and pain at the site of the rash
that can last for months or years after the rash has healed.
Alternative Work Schedules: Why Not Me?
Recently the CC Quality of Worklife Council received the following
My quality of life would be improved a lot if I could work a
flexible schedule. A lot of people in the Medical Record Department
want to do this but the director of the department will not let
it be. He has said no for years. We are the only employees in
the Clinical Center that can't have this benefit.
The Medical Record Department (MRD) is not the only department
at the Clinical Center that does not use flexible work schedules.
The MRD provides direct customer service to health care practitioners,
researchers, CC administration, Institute staff, and patients.
Routine hours of operation are 8:30 a.m. to 5 p.m. in all sections,
except the Record Management area (files area), which is open
from 7 a.m. to 7 p.m. It is essential that adequate MRD personnel
be at work on a continuous basis to serve customers when the
majority of other CC/NIH departments and offices are open for
business. Since many of the functional sections of the department
have relatively few employees, it is extremely problematic to
accommodate flexible work schedules, considering sick, annual,
and administrative leave absences, along with routine vacancies.
It is already a real challenge to maintain a critical mass of
employees for every workday, within the core hours of operation
for each section. Flexible work schedules would make it even
more difficult to maintain continuous, uninterrupted, high quality
customer service. However, employees experiencing unanticipated
hardship, directly related to the work schedule, are encouraged
to discuss their situation with their supervisors to see if there
are potential options for temporary fixes while the problem continues,
without unduly compromising the capability of the section to
accomplish its tasks.
More information from the Council
Alternative Work Schedules (AWS) are scheduling options that
are available to Clinical Center employees if adopted and approved
by management. AWS involves different types of workweeks other
than traditional schedules (8 hours per day/40 hours per week,
with fixed starting and quitting times). In many cases, use of
AWS permits employees to save leave by making appointments, taking
classes, or pursuing other personal needs during "core"
Because of patient care and research priorities or other circumstances,
however, it is not always possible to afford employees the opportunity
to participate. While a number of CC departments use AWS in a
permanent or temporary capacity, other departments do not. Employees
who seek AWS should discuss this with their supervisors to determine
if it is possible, or if other options may be considered to accommodate
employee needs. The OHRM website has additional information on
this topic (http://ohrm.cc.nih.gov/site/information.html). Also,
there are AWS informational brochures on the first floor, Bldg.
10, in the atrium area, and in the lobby of 6100 Executive Blvd.,
The Clinical Center Quality of Worklife Council would like
to remind employees about upcoming family supportive classes
being offered by the Education and Training Section of the OHRM.
Classes are free to CC staff and are held in Bldg. 10, Lipsett
6-1618 to register.
Child Care Options: An Educated Decision, Aug. 11,
from 9 a.m. to 11 a.m. Register by July 21.
Personal Financial Management, Aug. 26, from 9 a.m.
to noon. Register by Aug. 5.
De-Stressing for Adults and Children, Sept. 22, from
9 a.m. to 11 a.m. Register by Sept. 1.
Medical Record staffers Joe Hendery (far left), Mark Davidson
(second from left), and Shannon Hall (second from right) are
pictured with other volunteers, from the Red Cross, the Veterans
Administration, and the Bureau of Prisons. The CC group headed
to Fort Dix, in New Jersey, last month to help review the medical
records of incoming Kosovar refugees.
Three from CC assist Kosovar refugees
This Albanian phrase meaning "thank you" was one
of the most common phrases heard by three members of the CC Medical
Record Department (MRD) as they helped process arriving Kosovar
refugees at Fort Dix last month.
At the request of the Federal Emergency Management Agency,
Jerry King, director of the MRD, sought three employees to volunteer
their time in early June at Ft. Dix, in New Jersey.
King was pleased that within 30 minutes of the announcement,
he had a pool of nine volunteers.
"It was nice to have so many willing volunteers. I didn't
anticipate having so many," said King. "Those who went
did a real nice job."
Mark Davidson, Shannon Hall, and Joe Hendery were the three
medical records administrators selected for the task.
The three assisted the Fort Dix staff and other organizations
by reviewing refugee medical records to ensure proper documentation
for entry into the United States. Their main goal and responsibility
was to keep families together. Once the required documentation
was secured, they forwarded the information to gain final clearance
for the refugee families to be admitted to the U.S. The CC team
also made a few changes to the existing medical records system
to make it more user-friendly, and assisted with patient registration.
"Having the refugees leave the camp was bittersweet,"
said Hall. "The entire family is released to join their
host family together to start a new life. But on the other hand,
they're leaving the safety and security of the camp where they
have guaranteed shelter, food, health care, and the camaraderie
of the other refugees."
Over the course of the week, there were many observations
and surprises for the CC group, who weren't quite sure what to
expect when they packed their bags and headed for New Jersey.
"It was a scene of desperate people in a foreign place,"
said Davidson. "I found it rewarding and personally satisfying
to be able to help."
For Hendery, the children made the biggest impression.
"Kids are the same everywhere, I think," said Hendery.
"They were outside playing and having a good time. They're
just so resilient, and that's what really got to me. They did
have a sense of weariness, but were still behaving like normal
kids, playing on the swing sets and running around."
Hall, who shared a room with the attending social worker for
several days, heard many stories of loss from her, and also the
"There was a particular refugee who comes to mind. She
was a little older than me," said Hall, 26. "She spoke
English very well and was telling me how her family was separated
-- some fled to New Zealand and Australia. These stories are
just unimaginable to most people here in the States. I believe
that many of us take for granted what we have, the safety and
While working in the patient registration area, Hall had the
opportunity to speak with a child while passing out toys.
"I was sitting with this little girl named Emine, and
I was talking to her," she said. "We were trying to communicate
when her mother came up to me and rubbed my hair, and said, 'Mire,'
which means 'good.' That was just so rewarding, and I think little
experiences like that made all of our work worthwhile."
The group found it rewarding to work with the other organizations
also offering aid, and was pleasantly surprised by the positive
interaction of the different groups.
"One of the things that surprised me is that, over a
week's time, we never had a negative working experience,"
said Hall. "There were so many people working together in
such a small place, yet we didn't have any confrontations. Everyone
was just so pleasant and had such a team attitude. We were all
working together for the same goal, and it was a nice atmosphere
to be in."
Hendery agreed that the small quarters and less-than-perfect
conditions didn't affect the attitudes of the volunteers.
"I think that any time you are involved in a volunteer
effort, there's a feeling of camaraderie among the people working,"
said Hendery. "The common goal is to help these people,
and it's so tangible because you're right there and you see firsthand
who you're helping.
"I felt lucky to be a part of it," he added. "I
really didn't know what to expect, but I just knew it would be
an unforgettable experience."
- by Bonnie Flock
Front row (from left) are Spiritual Ministry Chief Ray Fitzgerald,
chaplain interns Nestor Nazario, Elliott Watters, Lisa Kenkeremath,
and Jane Halpern. Back row (from left) are interns Margot Critchfield,
Melinda Russell, Scott Carlson, Donald Fix, and Chaplain Karen
Learning to help patients keep faith
This summer the Spiritual Ministry Department welcomes eight
new participants to its Clinical Pastoral Education (CPE) program.
While striving to strengthen their skills and understanding of
the chaplain's role in a clinical setting, these CPE interns
will be learning through a plethora of educational activities
and extensive patient interaction.
The CPE program is designed to help its participants develop
and refine the abilities necessary for working with patients
and families in crisis. In the first of their 10 weeks here,
the diverse group, which consists of both seminary students and
Navy chaplains, have already discovered several pleasant surprises
and challenging realities that help create the unique environment
of the Clinical Center.
"It's remarkable how much the care here looks at the
total person," said Margot Critchfield, one of the chaplain
interns. "They approach the patient as a whole person when
they take into account the aspects of spiritual ministry, social
work, and recreation therapy. It is a tremendous model for other
Intern Scott Carlson added, "My personal experience with
hospitals and patients has been so different from what I have
seen here. There seems to be a smaller patient-to-doctor ratio,
which allows for a much more human approach and connection with
Accommodating the variety of patient faiths at the Clinical
Center poses a formidable and important challenge to the CPE
interns. As Chaplain Karen Morrow, Spiritual Ministry Department,
explains, "We are called on to relate to people from various
backgrounds that are not the same as our own. This is a place
where we have to help people faithfully, with respect for their
beliefs and world view."
Not only do the chaplain interns gain experience through their
daily visits with patients, they also have the opportunity to
participate in instructional programs, interact with doctors
and nurses, and observe surgical procedures as well.
As the CPE interns are further exposed to helping people in
times of illness and distress, they have perceived a sense of
hope in patients that reverberates throughout the Clinical Center.
Chaplain intern Jane Halpern elaborates: "I've spoken with
patients here who are on protocols that may be their absolute
hope -- or that may give somebody who could be my neighbor
or my friend the chance at living a good-quality, prolonged life.
You can't say that about many other hospitals."
- by K.C. Gardner
Karen Morrow, chaplain of the Spiritual Ministry Department,
was recently selected as one of five 1999 Outstanding Alumni
Award winners from the College of Communication Arts and Sciences
at Michigan State University (MSU).
The award recognized both her accomplishments at the Clinical
Center and her role as a key member of a pioneer research team
studying mass communication behaviors of the inner city urban
poor while she attended MSU. Her ability to interact with the
teenage African American population was vital to the success
of the fieldwork.
Morrow's B.A. degree from the Department of Communications
and one of her M.A. degrees in educational guidance and counseling
were each attained at MSU. The award was formally presented on
May 7 on the MSU campus.
- K.C. Gardner
MRI center opens
A ceremonial ribbon-cutting marked the opening of the new
NIH-Suburban MRI Center last month. Thanks to NIH grants, the
Center has state-of-the-art magnetic resonance imaging (MRI)
for use in diagnosing heart attack, coronary artery disease,
and stroke. CC radiology staff will assist in interpreting some
of the MRI scans. (See story in the April 1999 issue of CCNews.)
Pictured (left to right) are Roger Titus, chairman of Suburban
Hospital Healthcare System; CC Director Dr. John Gallin; NHLBI
Director Dr. Claude Lenfant; NINDS Director Dr. Gerald D. Fischbach;
and Brian G. Grissler, president and CEO
of Suburban Hospital.
(Photo courtesy of Suburban Hospital.)
The CC Workforce Diversity Advisory Council is looking for in-house
talent to help entertain during an upcoming diversity program.
The Council hopes to showcase a variety of talent from the diverse
population of the CC. All are encouraged to participate. For
more information, or to volunteer your special talent, call Carl
Lucas at 6-1584.
Heart disease study
The Heart Disease Risk Factors in African-Americans Study seeks
new participants for a study of the relationship between obesity
and heart disease risk factors in healthy, nondiabetic African-American
men and women. Participants can be of normal weight, overweight,
or obese and between the ages of 18 and 55.
Specifically, the study is looking at risk factors for triglyceride
concentration and the triglyceride-related risk factors of "unhealthy
cholesterol" (low density lipoprotein), "good cholesterol"
(high density lipoprotein), and body fat distribution.
There will be a series of four outpatient visits to the Clinical
Center, in which participants will have body fat analyses, an
electrocardiogram (EKG), blood tests, including cholesterol profiles,
and oral and intravenous glucose tolerance tests. All participants
will be compensated. For more information, call 2-7119.
Please call the Patient Recruitment and Public Liaison Office
at 1-800-411-1222 for more information about taking part in any
of the following studies:
Schizophrenia. Researchers at the National Institute
of Mental Health seek adult sisters, brothers, and parents of
family members with schizophrenia for a study of genetic and
other differences among them. Compensation provided.
Psoriasis. National Cancer Institute researchers seek
people with psoriasis for a new treatment study.
Endometriosis. The National Institute of Child Health
and Human Development invites women with pelvic pain associated
with endometriosis to take part in a new treatment study.
Allergic Asthma. Doctors at the National Institute
of Allergy and Infectious Diseases are seeking people ages 12
- 85, who have asthma symptoms at least three times a week
(wheezing, chest tightness, cough, night asthma) for a research
study of a new investigational asthma medication. Compensation
Masur Auditorium will be closed for renovations during the months
of July, August, and part of September. Pharmacology course
TSP open season
The Principles of Clinical Pharmacology Course, sponsored by
the Clinical Center, will begin Sept. 2. The course will be held
Thursdays from 6:30 p.m. to 8 p.m. in Lipsett Amphitheater, and
runs through April 27, 2000. Topics include pharmacokinetics,
drug metabolism and transport, assessment of drug effects, drug
therapy in special populations, and drug discovery and development.
An outstanding faculty has been assembled to present the lectures,
including Dr. Carl Peck of Georgetown University's Center for
Drug Development Science, Dr. Jerry Collins of the Food and Drug
Administration, and the Clinical Center's Dr. Arthur J. Atkinson,
Jr. Dr. Atkinson is also the course director. Before coming to
NIH, he was at Northwestern University, where he directed the
Clinical Pharmacology Center, and at the Upjohn Company, where
he was in charge of clinical drug development programs.
This is the second year that the course is being offered.
Last year, 180 students enrolled, and there was considerable
sustained enthusiasm for the course.
Registration is free and open to all interested persons. Syllabus
materials will be provided for each lecture. Certificates will
be awarded at the end of the course to students who attend 75
percent of the lectures. For more information, including the
registration form, consult the course web site (http://www.cc.nih.gov/ccc/principles/).
Editor: Sue Kendall
Guest Writers: Bonnie
Flock and K.C. Gardner
Clinical Center News, 6100 Executive
Blvd., Suite 3C01, MSC 7511, National Institutes of Health, Bethesda,
MD 20892-7511. Tel: 301-496-2563. Fax: 301-402-2984. Published
monthly for CC employees by the Office of Clinical Center Communications,
Colleen Henrichsen, chief. News, article ideas, calendar events,
letters, and photographs are welcome. Deadline for submissions
is the second Monday of each month.
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