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The sickle cell anemia pilot is an outgrowth of collaborative
research between several Institutes and departments. Shown here
are (from left) CCMD's Dr. Mark Gladwin, Jim Nichols, R.N., Nursing;
Dr. Alan Schechter, NIDDK; and Dr. Frederick Ognibene, CCMD.
CC researchers visit the community
It seemed quite fitting that during the season of giving a
roomful of people at Howard University were contemplating giving
unarguably the most a person can ever give--of themselves to
The room was dressed with a holiday theme and filled with
attendees ranging from babies to the elderly. All had at very
least two things in common. For one, as members of the Parents
Support Group for Children with Sickle Cell Disease, they all
were affected in one way or another by sickle cell anemia, a
painful and debilitating disease, which affects one in every
400 African Americans. And secondly, they all listened intently
to the promising words of their guests, Dr. Mark Gladwin and
Jim Nichols, R.N., with the CC Critical Care Medicine and Nursing
Departments, respectively, as they discussed a new project.
The project, co-sponsored by the Critical Care Medicine Department
(CCMD) of the CC and the NIDDK, has taken researchers out of
their labs and into the local community to study a new treatment
for the disease.
"This pilot provides a unique opportunity because there
is clearly a need for more and better treatment options for people
living with this debilitating disease," said Dr. Frederick
Ognibene, senior investigator in the CCMD. "We have been
lucky enough to find people in our community who want to see
an end to this disease and have been caring enough to participate
in our pilot project."
"This research initiative and outreach efforts demonstrate
the Clinical Center's commitment to identifying and meeting the
health needs of our community," said Dr. John I. Gallin,
"Clinical research is essential to the discovery of new
knowledge that leads to better health for everyone," said
Researchers from the Clinical Center and the NIH have visited
local churches, hospitals, and support groups to talk with community
members about the promising treatment and elicit participation
in the study. In addition to Howard University, the group is
also working with Children's National Medical Center, as well
as organizations such as the Armstead-Barnhill Foundation, which
serves the community by developing new medical research options
for sickle cell anemia patients.
That Saturday afternoon presentation at Howard University
not only gave the presenters an opportunity to explain the study,
but more than an hour-and-a-half after the meeting began, questions
on the latest research advances in the area were still being
fielded by Dr. Gladwin. "It is very exciting to go out into
the community and be accepted as we have been," said Dr.
Gladwin. "Many people have been very supportive of our efforts
and it is truly gratifying to see the response from community
members excited to have an opportunity to participate."
Despite the name of the support group, they provide resources
to more than just parents of sickle cell anemia patients, said
Pauline Davis, president of the group. Their membership often
includes siblings, friends, families, and patients themselves.
Their goal is to educate those affected by the disease, and they
often find presentations such as the one conducted by the CC
representatives very useful to the group. "We try to educate
ourselves about the disease and some of the newest treatments
that can help our kids lead normal lives," said Davis.
More specifically, the treatment involved in the CC pilot
is looking at the effects of nitric oxide on hemoglobin, which
is the molecule in red blood cells that carries oxygen from the
lungs throughout the body. Not to be confused with nitrous oxide,
or laughing gas as it is commonly known, nitric oxide is a colorless,
tasteless, and odorless gas that is the focus of this pilot.
"We have seen some pretty impressive early data and strong
scientific support that indicate nitric oxide could be effective,
" says Dr. Gladwin, the study's principal investigator.
"It's an avenue of clinical research and treatment we want
The pilot, under the CC's leadership, is a collaboration among
the NIDDK, NHLBI, and the NCI. "This has been a unique opportunity
for our Institutes to work together as a team," said Dr.
Ognibene. "It is inspiring to see so many Institutes investing
in this project to advance our knowledge of the disease."
The CCMD plans to continue presenting to local community organizations
regarding the pilot project. "Our goal is to continue to
achieve a strong community presence so that when we are ready
to move into a clinical research study of a specific treatment,
we will have a strong patient base," said Dr. Ognibene.
-by LaTonya Kittles
About the study
The Clinical Center pilot examines the effects of nitric oxide,
a colorless, tasteless, and odorless gas, on hemoglobin. Hemoglobin
is the molecule in red blood cells that takes oxygen from the
lungs and carries it throughout the body. Red blood cells usually
have a rounded shape. In sickle cell anemia, the cells become
elongated and "sickled." Those irregularly shaped cells
tend to clog arteries, which slows the flow of oxygen-rich blood
throughout the body. That slowing of the blood flow causes the
often-debilitating pain that sickle cell anemia patient's experience.
At the heart of the Clinical Center study is this question:
Can nitric oxide contribute to better blood flow that will decrease
the pain? Time and more research will tell.
For specific information concerning the pilot, contact Dr.
Gladwin at 6-9320.
New Year's wishes from the director
At midnight on Jan. 9, one door closes and another opens,
signaling a new year of change for the Clinical Center. Closing
is the Clinical Center's familiar front door on Center Drive.
Beginning on Sunday, Jan. 10--and for the duration of construction
for the Mark O. Hatfield Clinical Research Center--the Clinical
Center's main entrance will shift to the south.
Consider that a signal, too, for a new year filled completely
with challenge and opportunity. The plans and preparations for
our new research center will begin to take shape over the next
months and years. We'll all more fully see and feel the effects
of construction. As we begin a new year, I'd like to outline
some of the major accomplishments the Clinical Center has realized
over the past 12 months.
Clinical Center programs
Creating efficiencies while expanding services and programs
is never easy, but that's what the Clinical Center staff did
during 1998. As a result, $3.1 million from our FY98 budget will
be "carried over" for reinvestment in new programs
under the FY2000 budget. The CC Advisory Council will evaluate
proposals from the Institutes on how to use the money. Their
recommendations will go to Dr. Harold Varmus, NIH director, for
a final decision.
We initiated exciting new programs during 1998, including
one in organ transplantation. This will be a joint effort with
NIDDK, Walter Reed Army Medical Center, the Naval Medical Research
Center, and the Diabetes Research Institute of the University
of Miami. Trials in the transplantation of pancreatic islet cells
and kidneys will test new treatments for patients with type 1
diabetes or kidney failure.
The NIMH clinical brain disorder research program, previously
carried out at St. Elizabeth's Hospital in Washington, moved
to the Clinical Center's 4 West patient-care unit early in 1998.
That transition was a smooth one thanks to the splendid planning
and coordination of all involved.
On Aug. 31, the Clinical Center's contract for anesthesia
and surgical services with Georgetown University was brought
in-house and a new Department of Anesthesia and Surgical Services
created. Dr. Karen Williams, who had led the department while
it was under contract, was named chief of the new department.
Dr. Thomas Fleisher was chosen to lead the Clinical Pathology
Department. Dr. Ezekiel Emanuel, an advisor to the CC Department
of Clinical Bioethics for two years, joined our full-time staff.
Other key appointments in 1998 included Dr. Fred Gill and nurse
practitioner Laura Shay. This new team will provide consultation
in internal medicine.
As 1998 ended, the Clinical Center held a Forum on Pain Management
and Palliative Care to explore the best way to provide these
services within our hospital.
Educational opportunities in clinical research grew last year
thanks to two new programs. The first is collaboration in long-distance
learning with the School of Medicine at Duke University leading
to a Master of Health Sciences in Clinical Research degree. The
first class of 13 medical students and fellows was admitted in
September. They join a Duke classroom through teleconferencing.
The second new program is the post-doctoral Clinical Pharmacology
Research Associate Program (ClinPRAT), which has drawn about
175 students to the program's "Principles of Clinical Pharmacology."
A cooperative effort with the NIGMS, ClinPRAT will help prepare
scientists to conduct both basic and applied clinical pharmacology
The popular "Introduction to the Principles and Practice
of Clinical Research" continued in 1998. More than 1,100
students have completed the course since the program began as
a pilot in 1995.
In February, Dr. Harold Varmus, NIH director, extended the
Board of Governors charter until April 2000. Two new members
joined the Board of Governors in 1998, Dr. Michael Johns and
Dr. W. Marston Linehan. Dr. Johns is Executive Vice President
for Health Affairs at Emory University and Chairman of the Board
and CEO of Emory Healthcare. Dr. Linehan is chief of the Urologic
Oncology Branch, NCI. Dr. H. Clifford Lane, NIAID clinical director,
was named to complete the term of the late Dr. Jeffrey Hoeg.
Dr. Hoeg, an extraordinary scientist, physician, and friend,
died on July 21, 1998.
The Board continues to tackle major challenges. One initiative
is a "school-tax" approach to Clinical Center funding.
Developed and recommended by the Board in 1997, it was approved
during 1998 by Institute and Center directors and Dr. Varmus.
The initiative will provide a more predictable Clinical Center
assessment to the Institutes and encourage full use of CC services.
The Board also initiated operational reviews for CC departments,
beginning with the Materials Management and the Housekeeping
and Fabric Care Departments.
The Clinical Center Advisory Council, established in 1997,
continues to provide a strong voice and involvement for the Institutes
in Clinical Center issues affecting intramural clinical research
programs. A major contribution by the Council during the past
12 months has been planning for use of the new Clinical Research
In 1998, the Clinical Center's Board of Scientific Counselors
conducted its first review dedicated exclusively to science.
Operational aspects of departmental performance are reviewed
separately by the Board of Governors.
The Medical Executive Committee has also been busy in 1998,
which began with the election of Dr. Scott Whitcup, NEI clinical
director, to a two-year term as committee chair. A major action
was revision of the physician-referral policy to allow patient
In January, we asked Institute directors to nominate current
and former patients for membership in a group to provide advice
on design of the new Clinical Research Center. The Patient Advisory
Group's role quickly evolved. They now meet quarterly, providing
advice on and insight into patient concerns.
In 1998, we continued our efforts to form alliances with our
colleagues in health care and science. In February, we began
a stroke and cardiac imaging project with Suburban Hospital,
the NINDS, and NHLBI. In April, we joined with the National Rehabilitation
Hospital to work with individuals with physical disability caused
by illness and injury.
Communications and public outreach
We took major strides in identifying how the public views
the Clinical Center and structuring new approaches to recruit
patients. Working with Macro International, Inc., a professional
services firm, and Porter Novelli, a public relations firm, we
are developing a patient recruitment plan that includes physician
mobilization, community outreach, public and professional awareness,
and internal capacity building.
In July, Dr. Harold Varmus, NIH director, acted on a recommendation
by the National Academy of Sciences' Institute of Medicine to
make sure that the public had a strong voice in the work we do
and ultimately improve the setting of research priorities. The
Clinical Center joined all of NIH in designating an office for
public liaison. The Patient Recruitment and Referral Center,
now renamed the Office of Patient Recruitment and Public Liaison,
will lead that effort.
The Clinical Center's successes are the successes of all who
work here. As we begin 1999, remember that your enthusiasm, dedication,
and creativity continue to be our greatest strengths.
Male volunteers over 40 years of age and females over 50 years
of age are needed for a study to assess the effects of donating
blood on prevention of heart disease. Participants should have
donated blood no more than once in each of the last five years,
and given fewer than 15 units in their lifetime. Blood studies
and carotid ultrasound will be done. Two outpatient visits are
required. For more information, call Xin Fu at 2-4482.
Finding "The Way to Go"
The way we'll go will change at midnight on January 9. That's
when the Clinical Center's main entrance on Center Drive closes
forever. The main entrance south will open for business seconds
later on January 10. Watch for it: The Way to Go.
Dr. Dimitrios Boumpas (right), senior clinical investigator
with the Arthritis and Rheumatism Branch of the National Institute
of Arthritis and Musculoskeletal and Skin Diseases, received
this year's Distinguished Clinical Teacher Award. Presented annually
since 1985, the award recognizes excellence in clinical training
involving the direct care of patients by any senior investigator
at NIH. Also shown is Dr. Elif Arioglu, presenter of the award,
and CC Director Dr. John Gallin.
New for 1999 Clinical Center RoundTable
January 15 marks the debut of a new series, "Clinical
Center RoundTable." Broadcast live from the NIH television
studio to hospitals and academic health-care centers nationwide,
each one-hour program will feature a panel of NIH physician-scientists
discussing the latest clinical research on each topic. Dr. John
I. Gallin, Clinical Center director, will moderate, and viewers
are encouraged to call in with questions and comments.
"In addition to highlighting current research, we plan
to provide more clinically relevant information for our hospital-based
viewers," said Dr. Gallin. "We want to reach out to
a segment of the medical public that may not be familiar with
what we do here, and how it affects their practice."
Programs will be simulcast in Lipsett Amphitheater at noon
and everyone is welcome to attend. The January 15 program, "What's
New in the Imaging Sciences?" features Dr. R. Nick Bryan,
chief of Diagnostic Radiology and Associate Director for Radiologic
Imaging Sciences, and his colleagues Dr. Andrew Arai, Dr. Brad
Wood, and Dr. Ronald M. Summers.
Future programs will cover: ·
- Cutting-Edge Issues in Antiretroviral Therapy
- Hepatitis C
- Organ Transplantation
- Managing Depression
- Bone Marrow Transplantation
- Sexually Transmitted Diseases
- Current Issues in the Management of Breast Cancer
- Brain Attack: Acute and Ongoing Management Issues
- Frontiers in Immunization: New and Improved Vaccines
Watch CC News for dates and speakers.
New cost-savings program to reward employees for cost-savings
Cutting costs is a perennial New Year's resolution in business
and government, and the Clinical Center is no exception. Just
like other organizations, the CC has found it challenging to
come up with creative and effective ways to do so.
But not to fret, the CC Incentives Team, under the leadership
of Social Work Chief Dr. Adrienne Farrar, has devised a new way
to involve all CC employees in the cost-savings effort. Quite
simply, employees will receive cash awards based on a percentage
of money they save.
"The Incentives Team has worked hard to create a simple
mechanism for front-line employees to be rewarded for ideas about
how to do their jobs with less cost or with greater efficiency,"
said Dr. John I. Gallin, CC director. "We are extremely
excited about the potential outcomes that this mechanism can
have on our employees, as well as our organization."
Employees or groups who propose ideas that are proven to save
their departments money are eligible to receive a 10% "rebate"
of the savings (or a minimum of $100, whichever is greater).
Awards may not exceed $5,000 for individuals or $10,000 for groups.
An option also exists for the employee or group to use the reward
to purchase something for their department, e.g., a piece of
Here's an example:
An employee in the Nutrition Department noticed that food
containers with three sections were being used to send orders
to patients, even when only one food item was ordered. She suggested
that using single-serving foam containers would save storage
space and money and would be adequate for 75% of the food orders.
Her suggestion saved the department $800 a year. This person's
award would be the minimum of $100, since that is greater than
10% of the proven savings.
Now, $800 might not sound like a huge savings. But many small
savings combined can mean big savings to the Clinical Center.
"We realize that most of the ideas will generate modest
savings," said team leader Dr. Farrar. "We want employees
to start thinking creatively about cost savings, and even small
savings are valuable and can be rewarded too."
All employees below the level of deputy directors, associate
directors, and department heads are eligible to receive cash
payouts derived from the savings achieved from their ideas. Deputy
directors, associate directors, and department heads are eligible
for NIH, CC, and other monetary and nonmonetary awards to recognize
their efforts to achieve and support organizational goals.
So, what do you do with that great idea you've been mulling
over? Fill out a Cost-Savings Proposal Form, available from your
department head, and take it to your supervisor. Supervisors
and department heads are committed to considering each idea brought
to them and computing the potential savings. Once the savings
are verified by the Office of Financial Resources Management,
an adjustment will be made to the department's budget, and the
10% reward will be issued to the individual or group that proposed
the idea. Help with idea development may be available to employees
or supervisors. Contact Dr. Farrar at 6-9318 for more information.
CC News plans to publish success stories that result
from this initiative. Watch for them.
-by Sue Kendall
A Team Effort
The CC Incentives Team is an outgrowth of the annual department
heads retreat. It is anchored in the part of the Strategic Plan
that focuses on cost efficiency and cost effectiveness. Over
the past year the team considered a number of plans. The strategy
outlined in this article was approved last month by Dr. Gallin
and the Clinical Center Executive Committee.
Team leader Dr. Adrienne Farrar was assisted by team members
Barbara Beall, Alberta Bourn, Larry Eldridge, Sue Fishbein, Ray
Fitzgerald, Maureen Gormley, Jean Green, Sue Kendall, Michele
Lagana, Julia Matthews, Gracie Millender, Alisa Peinhardt, Carol
Romano, Bill Rosano, Maria Stagnitto, Mary Vailati, and Paula
Holiday celebrations at the CC
Last month, many departments here gathered to celebrate the
holiday season. Activities were planned for patients, guests
and staff alike. They included:
It's a family affair
Visiting with Santa Claus during Rehabilitation Medicine's
Holiday Open House (from left) were CC patient Frances Delahanty
and her granddaughter Crystal Selmer, along with family friend
Andrew Hembree, grandsons Ryan and Matt Selmer, and daughter
During a holiday luncheon for volunteers, seasoned
staff were able to meet and mingle with new volunteers who will
become greeters when the south entry opens. Food and fun were
at the top of the list for this celebration last month.
Jingle bell rock
The show choir from Winston Churchill High School in Potomac
were also on hand during the Holiday Open House to entertain
the crowd in the 14th floor gymnasium. Here they perform their
rendition of "Rudolph the Red-Nosed Reindeer." Holiday
songs weren't their only treat. The show choir, which has been
around for more than 25 years, showed their versatility by belting
out several medleys.
Bioethics rounds continue
"Resolving Cultural Conflicts in Patient Care" is
the subject of the Feb. 3 Ethics Grand Rounds presentation set
for noon in Lipsett Amphitheater. Guest speaker is Dr. Bernard
Lo, director of medical ethics at the University of California
at San Francisco and member of the National Bioethics Advisory
The Thrift Savings Plan open season runs until Feb. 1, 1999.
FERS employees who were hired before July 1, 1998, as well as
CSRS employees have an opportunity to change their current election
or make an initial participation election. For more information
contact human resources at 6-6924.
Nursing forum announced
The Nursing Research Forum will be held Jan. 21 from 2 to
3 p.m. in the Little Theater. Sessions will include "Clinical
Evaluation of Noninvasive Oxygen Saturation Monitoring in Critically
Ill Patients," and "The Health Related Quality of Life
of Persons with Implantable Defibrillators: A Meta-analysis."
To register, call Loan Kusterbeck at 5-2263.
Celebrate a legacy
The Office of Equal Opportunity will host the "1999 NIH
Celebration of the Legacy of Dr. Martin Luther King, Jr.,"
on Friday, Jan. 15 from 11:30 a.m. to 1:00 p.m. in Masur Auditorium.
The event will include several speakers and performers from the
metropolitan area. Sign language interpretation will be provided.
For additional information and reasonable accommodations, call
CC employees were special guests at a recent event designed
to "Celebrate Quality." Several department staff members
spoke to attendees to thank them for their consistent efforts
in promoting quality service and care to patients and investigators
in the Clinical Center. Staff were also informed of efforts towards
preparation for the Joint Commission on Accreditation of Healthcare
Organizations in 2000, the Clinical Center's new performance
measurement initiative, the upcoming patient perception surveys,
and the work of the patient education task force.
Editor: LaTonya Kittles
Clinical Center News, 6100 Executive
Blvd., Suite 3C01, MSC 7511, National Institutes of Health, Bethesda,
Maryland 20892-7511. (301) 496-2563. Fax: 402-2984. Published
monthly for CC employees by the Office of Clinical Center Communications,
Colleen Henrichsen, chief. News, articles ideas, calendar events,
letters, and photographs are welcome. Deadline for submission
is the second Monday of each month.
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This page last reviewed on 09/9/09