U.S. Navy Captain Pius Aiyelawo joins Clinical Center as chief operating offcer - NIH Clinical Center
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Spring 2018 In this issue:
• Students develop device for Project
SEARCH graduate to increase productivity
• Catalog of patient library resources
now accessible online
NIH...Turning Discovery Into Health®
U.S. Navy Captain Pius Aiyelawo joins Patient with rare disease
Clinical Center as chief operating offcer receives surprise visit
from bone marrow donor
What would you say to the person who saved
your life? A young man at the NIH Clinical Cen-
ter faced this very question early in 2018 when
he met the person who donated bone marrow
to treat his life-threatening illness.
Jackson Taylor has been a patient at the Clini-
cal Center since 2010, when he was just 10-years-
old. At that time, he came to participate in a trial
for patients with immunodefciency diseases.
Over the course of several years, researchers
at the NIH kept a close eye on Taylor’s condition.
His immune system did not function properly –
he often had severe and frequent infections and
illnesses. The care team eventually identifed a
defect in a gene called magnesium transporter
1 or MAGT1. In 2014, the research team made
Pius Aiyelawo, Clinical Center chief operating offcer, (left) was sworn into the Senior an even larger scientifc discovery – they identi-
Executive Service, by Dr. Lawrence Tabak, NIH principal deputy director. fed and named a new rare disease that affect-
In April, retired U.S. Navy Captain Pius inspire both patients and staff,” said ed Taylor and a handful of other patients. The
Aiyelawo joined the Clinical Center as the Dr. Jim Gilman, Clinical Center CEO. disease is an X-linked immunodefciency with
chief operating offcer. Aiyelawo is the Aiyelawo has held senior leadership magnesium defect, Epstein-Barr virus infection,
frst COO to oversee clinical areas in positions in hospitals and large medi- and neoplasia – known as XMEN.
addition to the administrative side. cal research programs throughout a This previously unrecognized disease brought
”Pius’s tremendous healthcare distinguished military career spanning Taylor back in 2016 to enroll in a National Can-
leadership experience is matched only over 27 years. Read more in the news cer Institute (NCI) bone marrow transplant trial.
by a positive energy and spirit that will release: https://go.usa.gov/xQbTM “When Jackson was found to have rapidly
expanding lymphatic tissues following exposure
to Epstein-Barr virus, the need for bone marrow
Frosting cookies and making cards, patients share transplant became urgent,” added Dr. Gulbu
Valentine’s Day with First Lady Melania Trump Uzel, an immunologist and staff clinician with
the National Institute of Allergy and Infectious
Diseases (NIAID).
While most people have Epstein-Barr virus
already in their body, they’ll never see side ef-
fects because their immune system keeps it under
control. But for patients like Taylor, whose immune
system is not working properly, Epstein-Barr virus
would likely lead to cancers of the immune system.
“A bone marrow transplant is a potential
cure for immunodefciency diseases,” said Dr.
Jennifer Kanakry, one of Taylor’s care providers
from the NCI. During a transplant, a patient
receives healthy blood-forming cells (stem cells)
to replace their own stem cells.
Taylor turned to the NIH’s Unrelated Donor
Stem Cell Transplant Program. In 2017, nearly
30 unrelated donor transplants took place in
Building 10, which was about 40% of all trans-
plants done at the NIH that year.
Jennifer Wilder, primary coordinator for the
program, works with patients’ clinical research
teams, the Clinical Center’s Department of Trans-
First Lady Melania Trump celebrated Valentine’s Day with pediatric patients at The fusion Medicine and Be The Match – the man-
Children’s Inn at NIH. View the live stream videocast of the First Lady’s visit and the ager of the largest marrow registry in the world.
full story at CC News online: https://go.usa.gov/xQaew DONOR page 2
Staff, need to access DONOR from page 1
electronic health She coordinates donor details, plans for
the marrow harvest and schedules the
records? Use the patient’s infusion of cells.
Taylor’s transplant followed the
online request form! collaborations across the NIH: he was
usual pattern of the many research
The Clinical Research Information System cared for by the NCI’s Experimental
(CRIS) – NIH’s electronic health record – Transplantation and Immunology
touches virtually everyone at the Clinical Branch with involvement from experts
Center in one way or another, including at the NIAID and the Clinical Center.
staff from 17 NIH Institutes who work in In September 2016, Wilder found
a match for Taylor. Sean McLaugh-
Building 10. The Department of Clinical Re- lin, a 22-year old from New England,
search Informatics, the team that manage was willing to make a bone marrow
the Clinical Center’s IT systems, including donation and his blood type, among
CRIS, recently updated the form staff use to other factors, matched Taylor’s needs.
request access to this important system. McLaughlin traveled to D.C. to donate
When a student, trainee or other staff his marrow Dec. 21, 2016 and it was A year after his bone marrow transplant, Jackson
(who are not medical prescribers) join the infused into Taylor a few hours later. Taylor (right) meets his donor Sean McLaughlin (left).
NIH, often they need to request access to “Going through a transplant is a
CRIS as part of their job. Whether it is to process,” said Kanakry. After his mar- priceless,” said Wilder. “It’s also incredibly
document patient care, retrieve data or row graft was given that December day, important to highlight things like this for
analyze trends, NIH staff need to access “there is a long process of preventing graft our staff – the research teams as well as the
clinical and research information to assist versus host disease, preventing infection, Clinical Center staff who care for patients
in their work and help achieve the mission waiting for the blood counts to come back every day. I am really pleased that we could
of the NIH to improve the health of the na- up from zero and slowly building up an share a success story with them, and also
tion. The NIH carefully evaluates CRIS access entirely new, healthy immune system.” highlight the donor in a way that made his
requests to ensure safeguards are in place The transplant, delivered by IV, may sacrifce and gesture real to everyone.”
have taken only a few hours, but the story The visit made a real impact.
that protect patient’s medical information.
didn’t end there. “Meeting Sean, my bone marrow donor,
These are the recent updates to the was crazy largely due to the fact that I
According to the Be The Match bone
electronic CRIS Account Request Form marrow registry rules, unrelated donor didn’t know he was going to meet me in
(also known as eCARF): transplants are anonymous to the NIH care the hospital. When we came face to face, it
• The employee’s supervisor should fll out providers and the patient for at least one was like meeting a long-lost brother I never
and electronically sign the electronic CRIS year following the transplant. So Taylor and knew I had. The amount of emotions was
Account Request Form (https://cris.cc.nih. McLaughlin corresponded anonymously overwhelming, I wasn’t sure what to say.
gov/accounts/pdf/CARF.pdf) using their over the next year. The frst letter they Spending the day together and getting to
PIV card and click ‘Submit Form’ (applicant wrote was on the day of the transplant. know him was amazing,” said Taylor.
signature not required). “I think in total we wrote about eight “Knowing that there were two people
• Once ‘Submit Form’ is selected, it will be letters back and forth to each other,” in that room who had never met, but
automatically forwarded to a new email recounted Taylor. “Even though words on share the same DNA was a profound and
address of the CRIS Security team: paper weren’t fully able to express my emo- amazing feeling,” added McLaughlin.
crisaccessrequests@cc.nih.gov tions, it was extremely helpful to express my Taylor’s experiences haven’t ended with
• The electronic CRIS Account Request gratitude for my donor’s sacrifce.” meeting McLaughlin. A Canadian citizen,
Form specifes access type based on user McLaughlin remembered, “I couldn’t Taylor is now a volunteer for the Canadian
roles. Select the employee's role based on have been happier each time he sent a Blood Services, the main organization that co-
their NIH credentialing status, job function letter telling me how well he was doing. It ordinates blood donations and recruits bone
made me realize that everything I did was marrow donors in Canada. He plans to work
and need to know. on events that educate and inspire people to
worth it. It actually worked!”
The form should be submitted prior to On Jan. 5, 2018, they were fnally able donate blood and register for bone marrow
taking CRIS training, with the exception of to meet face to face. Taylor was at the donation. “It really does save lives,” he said.
credentialed prescribers (M.D., P.A., N.P., Clinical Center for his one-year transplant As for McLaughlin, he found donating
D.O., Dentists, Audiologists). Register online follow-up visit. But to his surprise, Wilder marrow to be incredibly powerful.
for CRIS training: https:// had worked with Taylor’s transplant team, “For many patients, a bone marrow do-
training.cit.nih.gov/. View more details his social worker and his family to arrange nation is the last resort or only option,” he
(https://cris.cc.nih.gov/accounts/index.html) for him to fnally meet McLaughlin. said. He encouraged others to join a donor
or watch the CRIS video (https://youtu.be/ “I loved bringing the patient and donor registry. “Knowing that you are the only
WxqHan1xCto). together, and seeing the family’s reaction was reason someone is alive is remarkable.”
Read more online! Scan the barcode or visit Clinical Center News
www.cc.nih.gov/about/news/newsletter.html Editor: Molly Freimuth Published monthly by the Offce of Communications
• Health & Human Services Secretary, Alex and Media Relations, Justin Cohen, chief
Contributors: Deborah Accame, Lester Davis,
Azar, meets with patients, NIH staff in March Cindy Fisher, Donovan Kuehn, News, article ideas, calendar events and photos are
• National Eye Institute turns 50 Maria Maslennikov, Angela Missouri welcome. Submissions may be edited.
• Dr. Jerome Adams makes frst NIH visit as
National Institutes of Health Clinical Center
20th U.S. Surgeon General 10 Center Drive, Room 6-2551 Contact: 301-594-5789
Use a downloaded app on a smartphone or tablet to scan the Quick Bethesda, MD 20892-1504 Molly.Freimuth@nih.gov
Response (QR) barcode. You will be directed to the CC News online.
2 Clinical Center news Spring 2018
Poolesville High School students develop device for
Project SEARCH graduate to increase productivity
Thanks to the bright minds of to Ricky, we were inspired students designed a specialized
three local high school stu- by his positive attitude and tray that could hold and align
dents, NIH Clinical Center em- determination to complete his the documents. After placing
ployee Ricky Day has been able tasks independently, regard- them in the tray, Day can slide
to use a new device that has less of how diffcult they may an envelope onto the device,
helped him more than double be,” said Alex Carbonell. He, surrounding the paper. Finally,
his productivity in the Offce of along with his classmates using the handles, Day can tilt
Administrative Management. Dhruv Maniktala and Ashwini the device to allow the paper
Day, who graduated from NIH Thirukkonda, are involved in to slip into the envelope.
Project SEARCH in 2011, is in the Science, Mathematics, and Traveling back and forth
charge of processing patient taxi Computer Science program at from school to the NIH over
voucher receipts and invoices. By Poolesville High School. As a several months, the students
entering the receipt amounts into part of the program, they were brought updated prototypes
an Excel spreadsheet, he is able required to fnd an opportunity and tweaked it according to
to compare the charged amount to apply their knowledge from feedback from Day. Ricky Day, front, holds the prototype
to the travel time – checking the course in the community. “As we’ve worked with device designed for him by the three
students from Poolesville High School.
for possible discrepancies or “Despite our limited experi- Ricky, we’ve seen just how
overcharges. As part of this, Day ence in the engineering feld, hardworking and optimistic he more than doubled his produc-
has to take documents in and we wanted to help Ricky be- is. Ricky’s also a problem-solver tivity, which will impact the Clin-
out of a manila envelope. The come more confdent, indepen- in his own right, and his ideas ical Center and its patients. Still,
task of placing the large stack of dent and productive. With this and suggestions have driven our the best thing would have to be
papers back into the envelope is in mind, we set out to build an design process,” Thirukkonda seeing Ricky’s face light up after
especially challenging due to assistive technology for him,” said. “It’s also been amazing to he’s used a new prototype [of
his limited dexterity. Maniktala said. see just how much our simple, the device], and knowing that
“After being introduced To solve the problem, the and inexpensive device has our work made that happen.”
Let’s move with heart: NIH staff celebrate Catalog of patient
American Heart Month in February library resources now
accessible online
The Clinical Center patient library catalog
recently went digital – NIH patients, their fam-
ily members and caregivers can now go online
from any computer, tablet or mobile device to
browse and reserve more than 7,000 available
items. Previously, the catalog was only acces-
sible to those who traveled to the 7th foor
to conduct a search. Now users can review
materials at home and hold them for when
they arrive. If they’re already in the hospital,
guests can use their bedside TV/Tablet.
The Patient Library offers books, audio
books, music, DVDs and XBOX 360 games.
They subscribe to over 30 magazines and
have newspapers available, too. Laptops,
tablets and musical instruments are on hand
for check out. The library recently added the
three-part Discovery series First in Human,
NIH staff flled the Clinical Center atrium Feb. 2 — known as Wear Red Day — to celebrate
which aired in August 2017, to their tablets.
American Heart Month. Coordinated by the National Heart, Lung, and Blood Institute (NHLBI), The series captures the real-life experiences of
attendees line danced for 30 minutes at the event to raise awareness of heart disease, which is doctors, researchers, staff, patients and their
the number one killer of both men and women in America. Research shows that being physi- caregivers at the Clinical Center. Ask a librar-
cally active can help lower the risk of heart disease and stroke. At the event, Dr. Gary Gibbons, ian to access the show, or, inpatients can call
NHLBI director, invited everyone to move more often. “You can change the way you live, how
you eat, how you become more active!” Attendees were encouraged to record a short video 301-451-7603 and staff can make arrange-
demonstrating their favorite way to move, and share it on Twitter and Instagram, using #Move- ments to bring a tablet to the bedside.
WithHeart. View videos from staff in the Clinical Center: www.movewithheartpledge.com Visit the catalog: https://go.usa.gov/xQrnT
Spring 2018 Clinical Center news 3
Personnel updates
Laboratory Medicine Nursing Surgery Clinical Research Training
After a Dr. Gwenyth In December, & Medical
distinguished Wallen was Dr. Jeremy Education
35-year- named Chief Davis was
career at Nurse of the named Sur- Dr. Thomas
the Clini- Clinical Cen- geon-in-Chief Burklow has
cal Center, ter Nursing at the Clinical joined the
Dr. Thomas Department Center. Davis NIH to lead
Fleisher re- in December oversees all the Medi-
tired as Chief 2017. Wal- surgical activi- cal Research
of the Department of Labora- len has served as the interim ties, provides strategic planning Scholars Program, a year-long
tory Medicine at the end of chief nurse since late 2016. In for surgical care and works to program that competitively
2017. Fleisher was in charge of this role, she is the hospital’s improve surgical quality and selects about 40 medical,
diagnostic testing for inpatient senior nursing executive re- safety protocols throughout the dental and veterinary stu-
and outpatients that involved sponsible for nursing practice, hospital. Each year at the Clini- dents seeking future careers
chemistry, hematology and mi- standards, policies and profes- cal Center, more than 2,200 in biomedical research to join
crobiology testing. His depart- sional development of the operations are performed by laboratories on the Bethesda
ment also provides phlebotomy more than 600 nurses practic- over 40 senior surgical staff. campus to engage in ba-
services. He served as depart- ing in the Clinical Center. Davis will work with Clinical sic, clinical or translational
ment head since 1998. She provides national and Center staff, including those research.
“[He] has been one of the global leadership within the in the Department of Periop- Prior to NIH, Burklow
principle reasons why the Clini- clinical research enterprise. erative Medicine, to ensure served as a senior attend-
cal Center is the superb facility Wallen remains focused on that NIH continues to provide ing pediatric cardiologist at
that it is,” said longtime col- developing this specialized the highest level surgical care Walter Reed National Military
league, Dr. Henry Masur, Chief nursing role and disseminat- to patients. During his frst Medical Center where he also
of the Critical Care Medicine ing information, education year, he will focus on central- served as Chief of Pediatrics.
Department. “He has been an and innovations on safety and izing surgical outcomes data, In addition to his duties with
unsung hero of the intramural quality nursing care delivery improving perioperative ef- the Medical Research Scholars
program’s success.” and clinical research practice. fciency and providing risk-as- Program, he will continue to
Effective January 2018, Wallen is a newly Tenured Se- sessment for clinical research- use his expertise and serve
Dr. Karen Frank assumed the nior Investigator and Chief of related procedures. He is also as a pediatric cardiologist for
responsibilities of Acting Chief Nursing Research and Transla- a Surgical Oncologist in the the Clinical Center’s youngest
of the department. tional Science. National Cancer Institute. patients.
Starbucks Frasca, architect and designer of the north part of Building 10, dies
Robert Frasca, a founding design tion, added “[Frasca]
marketplace partner responsible for creating quickly grasped our
the north side of Building 10, mission. Aside from
cafe opens known as the Mark O. Hatfeld [his] great design skills,
Clinical Research Center (CRC), he had a remarkable
died Jan. 3. Frasca, 84, worked ability to listen and
for Zimmer Gunsul Frasca respond to our stake-
Architects, the frm selected holders. He grasped
from an international design how patients and their
competition in 1996 to design families react to a seri-
the CRC. The 870,000-square- ous illness. He under-
foot addition, which opened in stood the stress care
2005, has 200 inpatient beds providers and scien-
and 93 day-hospital stations. tists face. With good
To Frasca, working at the humor, optimism, Harold Varmus, Robert Frasca, Mark Hatfeld
Clinical Center was more than inclusiveness and and John Gallin at the groundbreaking of
just a job. sensitivity [he] became the hospital’s new addition.
“He loved scientists and a friend of the NIH. emotional investment you have
The Clinical Center Starbucks [doctors] and felt they were In 1997, Frasca spoke before in the building, the better build-
Marketplace opened Feb. 2. The doing God’s work and he was an audience of Clinical Center ing it’s going to be,” Frasca said.
cafe, which sits where the former only providing the cathedrals researchers and staff about the Frasca’s portfolio includes
Au Bon Pain was located, offers for it all to happen,” Frasca’s importance of their input when Doernbecher Children’s Hospital
pastries, muffns and cookies as in Portland, Ore.; the Memorial
wife, Jeanne Giordano, said designing the new facilities.
well as hot and cold beverages.
Patients, staff and visitors can recently to John Gallin, NIH’s “We really believe that a Sloan Kettering Cancer Cen-
enjoy hot meals and additional associate director for clinical good science building can ter’s Mortimer B. Zuckerman
snacking options. For more infor- research and chief scientifc of- contribute to good science. In Research Center in New York;
mation, contact John Crawford, fcer of the Clinical Center. designing this building, it is a and the Dana-Farber Cancer
an NIH food services program Gallin, who was the Director partnership. We literally learn Institute’s Yawkey Center for
manager, at 301-402-8180. of the hospital during renova- from one another. The more Cancer Care in Boston.
4 Clinical Center news Spring 2018
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