Download Volume 1 - Providence

Spring/Summer
Newsletter
2016 | issue #1
Providence
MS
Welcome to our inaugural issue of the Providence MS Newsletter. We plan on producing a newsletter twice year to provide
updates in the field of Multiple Sclerosis. In addition, we will provide information on general wellness and introduce you to
our staff who help make this a wonderful center.
Medication Update
Daclizumab (Zinbryta) is currently
being reviewed by the FDA, and approval of this medication is expected
later this year. This medication is given
via a subcutaneous injection every
4 weeks. How Daclizumab works is
unique compared to our other medications. The medication is believed
to influence a type of cell called
natural killer (NK) cells which may
play a role in regulating the immune
system. In clinical trials, which our
center participated in, the medication
demonstrated a 45 percent reduction
in relapses compared to interferonß1a (Avonex). In addition, there was
significant reduction in the number
of MRI changes. Of course, safety is
extremely important, and there is the
potential to experience side effects
with any medication. In the clinical
trials, some patients on Daclizumab
developed a rash including eczema. In
addition, elevations in liver enzymes
were seen in a small percentage of
people. So, possibly, patients who are
on this medication may need frequent
lab tests to monitor the liver.
Ocrelizumab just completed clinical
trials. This medication may not only
be approved for patients with relapsing disease, but benefits were seen
in a separate trial in patients with
primary progressive multiple sclerosis.
This would be the first medication
Currently, there are 12 medications available for the treatment of
relapsing multiple sclerosis. By the end of 2017, there will be two
new additional medications – Daclizumab and Ocrelizumab.
In this Issue
2 | Interview with Chiayi Chen, RN, Ph.D.
5 | Enrolling Clinical Studies
aregivers: The Hidden Patient
3|C
7 | Our Program & Our Providers
4 | F lare vs Pseudo Flare- When is it real?
ews & Events
8|N
approved for this form of MS. The
medication is given through an IV
every 6 months. A medication called
Rituximab is very similar to Ocrelizumab, but the infusions are better
tolerated. However, a reaction to the
medication at the time of the infusion
is very common. In the relapsing trial,
this medication reduced relapses by
46 percent compared to interferonß1a (Rebif ). In addition, almost all
patients had no new activity on their
follow up MRIs. Fortunately, there
were no major safety concerns including risk of infection. However, it may
be too early to tell. Hopefully, the
medication will be approved in the
Spring of 2017. n
Providence Brain and Spine Institute | Team Member Spotlight
Interview with Dr. Chiayi Chen
Interview by Kyle Smoot, M.D.
Today, I was fortunate
to interview Dr. Chiayi
Chen as she is
extremely busy. She
is the program director
Tell me more about the registry?
Initially, the registry was started for
patients in our clinic, but the registry has been expanded to the Pacific
Northwest as a regional registry.
for clinical research at
Dr. Chiayi Chen
both the Providence
Brain and Spine Institute (PBSI), and
Women and Children’s Program.
How long have you been
at Providence?
Over 8 years
What was your previous job prior
to coming to Providence?
I was working on my PhD at UCLA
School of Nursing, with a focus
on Health Services Research and
during that time, I was involved in
a number of NIH grants and worked
as a research nurse at Cedars-Sinai
Neurosurgical Institute on dendritic
cell vaccine clinical trials for Gliobastoma Multiforme (GBM).
How did you become interested
in MS?
My first job at Providence was a
program manager, working with
Dr. Cohan to establish the Pacific
Northwest MS Registry, formally
Oregon MS Registry.
2|
How many patients are in
the registry?
4700 patients, and 80 percent are
from Oregon. We are planning to
expand to all Providence ministries
and affiliates and have representation
from communities across the
Pacific Northwest.
How is the registry conducted?
There is now an online registration
and survey. Information is collected at
the time of registration and annually.
What information is collected?
We collect demographics, MS history,
MS treatments, initial and current MS
symptoms, disability status, healthcare
utilization, medication adherence,
health behaviors, quality of life.
How is that information used?
Several abstracts have been
presented at major neurology
meetings including the American
Academy of Neurology, ECTRIMS
and CMSC.
How many clinical trials are active
at the PBSI?
45 to 50 trials
Wow, that is a lot! How about
for MS?
15 to 20 trials. The remainder are
for ALS, dementia and stroke.
Given the large number of trials,
how many people are part of the
research team?
We have 15 dedicated research staff
on the team. They are the number one
factor to our success!
Well enough about work, what do
you like to do outside of work?
I enjoy gardening, yoga, and hiking.
I also like sporting events, but only
when my boys are participating. n
I would like to thank Dr. Chen for taking the time to meet with me today. She
is such a valuable member of our team. Without her, our research program
would not be as successful.
In addition, she is a lovely person!
Spring/Summer 2016, Issue #1 | Providence MS Newsletter
Caregivers:
The Hidden Patient
Written by Sam Brighton, RN, BSN
Caring for a family member with a chronic condition such as Multiple Sclerosis or dementia is a very important
and rewarding role. At the same time, caregiving is a stressful role that impacts many areas of a caregiver’s life:
work life, social life, physical health (such as high blood pressure), and mental health (such as depression).(1)
Caregivers who prioritize taking care
of themselves are better able to provide
quality care for longer periods of time
when caring for a family member.
There is a reason why the airline
industry advises passengers to put on
their own oxygen mask first before
helping another passenger – if you lose
oxygen and pass out, you cannot help
the person sitting next to you. Likewise, if you are overwhelmed with the
demands of caregiving, without stress
reduction strategies, you are vulnerable
to burnout, and you put the quality of
your care at risk.(2)
There is help! There is hope! Both
Oregon and Washington operate
Family Caregiver Support Programs
which exist to support you in your
caregiving role – they want to help
you take care of yourself so you can
continue caring for your loved one.
They offer information and referrals,
education, support groups, counseling,
and respite services.
Respite services provide a temporary
break from caregiving so the caregiver
can go to the store or their own medical appointments, or reconnect with
a hobby.(3) Respite services help the
caregiver’s ability to manage stress and
increase their quality of life.(4) Respite
care makes the family stronger and
protects the health and well-being
of everyone involved.(3) Caregivers
who use respite report less depression
and feelings of burden and they
report improvements in physical
health problems.(5)
In Oregon, you may contact the state
Family Caregiver Support Program to
be connected to your local office. They
can discuss costs and may be able to
provide financial assistance for people
who meet income requirements. Their
phone number is (855) 673-2372. In
Washington, the phone number for
the Family Caregiver Support Program
is (509) 766-2568.
As always, if you have any questions
about caregiver support programs or
need assistance with anything that is
getting in the way of your health and
wellness, please call Sam Brighton,
RN – the clinical case manager at
the Providence MS Center – at
(503) 216-1057. n
Sources
1 – Eifert, E., Adams, R., Dudley, W., Perko, M. (2015).
Family Caregiver Identity: A Literature Review. American
Journal of Health Education, 46(6), 357-367.
2 – Strawderman, M. (2015). Caregiver fatigue and the
importance of respite. Virginia Nurses Today, 23(4) 8-11
3 – Link, G. (2015). The administration for community
living: programs and initiatives providing family caregiver
support. Generations, 39(4), 57-63.
4 – Cohen, S., & Warren, R. (1985). Respite Care. Rehabilitation Literature, 46(3-4), 66-71
5 – Arksey, H, Jackson, K, Croucher, K, Weatherly, H,
Golder, S, Hare, P, Newbronner, E, and Baldwin, S, (2004).
Review of respite services and short-term breaks for
carers of people with dementia. National Health Service,
Service Delivery Organization, London.
Family Caregiver Support Programs: Oregon | (855) 673-2372 Washington | (509) 766-2568
Providence MS Center | (503) 216-1057
Spring/Summer 2016, Issue #1 | Providence MS Newsletter
|3
Flare vs Pseudo-flare When is it Real?
Written by Bobbi Lee Roth, RN/BSN & Kali Dailey, RN
Multiple Sclerosis (MS) is a chronic,
progressive disease of the central
nervous system (CNS). The central
nervous system includes the brain,
optic nerves, and spine. Early disease
is often referred to as relapsingremitting multiple sclerosis and is
characterized by relapses or “flare ups”
or “attacks” –which is caused
by inflammation in the CNS –
followed by periods of remission.
Sometimes individuals with multiple
sclerosis experience pseudo-flares. The
prefix, “pseudo” means “not real or
genuine.” Although symptoms of a
pseudo-flare may seem like a true flare,
it is not. Symptoms of a pseudo-flare
may include weakness, numbness,
sensation changes, visual difficulties,
tingling or dizziness. Pseudo-flares
usually have a trigger such as heat,
stress, or illness. Once the root cause is
known, you can begin a care plan. For
example, if you experience neurological symptoms during a vigorous work
out, take the time to cool down and
cool off. The symptoms will return
to normal and not cause permanent
damage. Investing in a cooling vest
can help you maintain a low core
temperature. The Multiple Sclerosis
Association of America (MSAA) can
be a great resource.
4|
www.mymsaa.org/msaa-help/cooling
Apply early!
may need a MRI and/or 3 to 5 days
of a steroid infusion. n
If your symptoms persist past 24
hours, please call your neurologist or
send a MyChart message (mychartor.
org or download the MyChart app on
your I-phone or Android). Ask yourself the following questions:
A
Join the Pacific Northwest
Multiple Sclerosis Registry
How long have you had
your symptoms?
B
Are they brand new?
C
Have you recently been ill?
D
Do you have any signs
or symptoms of a urinary
tract infection?
E
Have you been emotionally
or physically stressed?
The registry was developed by the
Providence MS Center in collaboration
with the National MS Society - Oregon
Chapter in 2007. To date, more than
4,500 participants have completed
confidential surveys. The goal of
the registry is to provide an accurate
assessment of the number of individuals living with MS in the Northwest
and to learn more about the course
of the disease.
F
Have you been over-doing it?
G
Have you been hydrating
and getting enough sleep?
Communicating with your neurologist
is key when it comes to differentiating
a pseudo-flare vs a true MS flare. We
are here to help! A “true” MS flare
is when you have new neurological
symptoms and your overall condition
seems worse. These symptoms last for
at least twenty four hours and you
To sign up or learn more about
the registry, visit us at:
www.pacificnwms.org
9155 SW Barnes Road, Suite 731
Portland, OR 97225
Phone: 503-216-1022
Email: [email protected]
Pacific NW MS Registry Team
Tamela Stuchiner, Research and
Quality Program Manager
Sarah Baump, Research Assistant
Trevor McKee, Data Analyst
Spring/Summer 2016, Issue #1 | Providence MS Newsletter
Clinical Studies | Enrollment
STUDY TITLE: A 12-month, randomized, rater- and dose-blinded study to compare the efficacy and safety of fingolimod 0.25 mg
and 0.5 mg administered orally once daily with glatiramer acetate 20 mg administered subcutaneously once daily in patients with
relapsing-remitting multiple sclerosis (ASSESS)
SPONSOR: Novartis Pharmaceuticals
SITE PRINCIPAL INVESTIGATOR: Kiren Kresa-Reahl, MD
SITE CONTACT: Tiffany Gervasi
STUDY TITLE: The Effect of ACTH on Measures of Fatigue in Patients with Relapsing Multiple Sclerosis
SPONSOR: Providence Health & Services
SITE PRINCIPAL INVESTIGATOR: Stanley Cohan, MD, PhD & Walter Carlini, MD, PhD (Medford) SITE CONTACT: Arlena Georgeson & Kari Jaasko (Medford)
STUDY TITLE: Long-term, Prospective, Observational, Multinational, Parallel-cohort Study Monitoring Safety in Patients with MS Newly
Started with Fingolimod Once Daily or Treated with Another Approved Disease-modifying Therapy (PASSAGE)
SPONSOR: Novartis Pharmaceuticals
SITE PRINCIPAL INVESTIGATOR: Stanley Cohan, MD, PhD & Walter Carlini, MD, PhD (Medford)
SITE CONTACT: Tiffany Gervasi & Kari Jaasko (Medford)
STUDY TITLE: Measurement of Relaxin in the Serum and Cerebrospinal Fluid of Subjects With and Without the Relapsing Form
of Multiple Sclerosis (RELAXIN)
SPONSOR: Providence Health & Services
SITE PRINCIPAL INVESTIGATOR: Stanley Cohan, MD, PhD
SITE CONTACT: Hannah Voss
STUDY TITLE: A Multicenter, Double-Blind, Placebo-Controlled Study of Montelukast on Gastrointestinal Tolerability in Patients
With Relapsing Forms of Multiple Sclerosis Receiving Tecfidera (Dimethyl Fumarate) Delayed-Release Capsules (MITIGATE)
SPONSOR: Biogen Idec
SITE PRINCIPAL INVESTIGATOR: Kyle Smoot, MD
Spring/Summer 2016, Issue #1 | Providence MS Newsletter
SITE CONTACT: Arlena Georgeson
|5
Clinical Studies | Enrollment, continued
STUDY TITLE: Plegridy (pegrinterferon β-1a) Real World Effectiveness and Safety Observational Program (POP)
SPONSOR: Biogen Idec
SITE PRINCIPAL INVESTIGATOR: Kiren Kresa-Reahl, MD & Walter Carlini, MD, PhD (Medford)
SITE CONTACT: Jose Archuleta & Kari Jaasko (Medford)
STUDY TITLE: A pilot study of warm and cold compress to reduce injection site erythema due to peginterferon-beta-1a in
multiple sclerosis
SPONSOR: Evergreen Health
SITE PRINCIPAL INVESTIGATOR: Kyle Smoot, MD
SITE CONTACT: Arlena Georgeson
Clinical Research | Team
Stanley Cohan, M.D., PhD,
Director and Principal Investigator
Kiren Kresa-Reahl, M.D., Principal Investigator
Kyle Smoot, M.D., Principal Investigator
Walter Carlini, M.D., PhD,
Principal Investigator (Medford)
Leah Gaedeke, FNP, Sub-Investigator
Chiayi Chen, RN, PhD, Program Director
Tiffany Gervasi, MPH, CCRP, Supervisor
Darren Larsen, RN, BS, CNRN, SCRN, Supervisor
Lois Grote, RN, Data Coordinator
Jose Archuleta, Clinical Trials Coordinator
Raina Benoit, Clinical Trials Coordinator
Lynette Currie, Clinical Trials Coordinator
Arlena Georgeson, CCRP, Clinical Trials Coordinator
Kari Jaasko, CCRC, Clinical Trials
Coordinator (Medford)
Sarah Jamieson, Clinical Trials Coordinator
Dana Lassiter, CCRC, Clinical Trials Coordinator
Chad Parks, CCRP, Senior Research Coordinator
Hillary Frey, Clinical Research Assistant
Hannah Voss, Clinical Research Assistant
Emily Johnson, Clinical Trials Coordinator
For more information on clinical trials and research, visit us at
oregon.providence.org/our-services/c/clinical-trials-brain
or clinicaltrials.gov
6|
Spring/Summer 2016, Issue #1 | Providence MS Newsletter
Providence
Multiple Sclerosis
Center
Providence Multiple Sclerosis Center,
the only center of its kind in Oregon,
is the state’s leading care provider for
people with MS. Our medical director, Stanley Cohan, M.D., Ph.D., was
an investigator in the original, pivotal
trial of beta interferon 1-A, one of the
key medications for treating multiple
sclerosis. He continues to play a leading role in MS research and founded
the Pacific Northwest Multiple Sclerosis Registry Project, which will be used
to help advance treatment of multiple
sclerosis.
Our goal at Providence Multiple
Sclerosis Center is to provide persistent, proactive, focused treatment that
minimizes the effects of MS on your
life. Patients benefit from comprehen-
sive services that may include medication therapy, physical rehabilitation,
counseling and other support. In
addition, patients have access to the
newest therapies through regional and
international clinical trials.
Services:
• Highly advanced diagnostics
• Personalized treatment plans
Our Providence Multiple Sclerosis
Center team specializes in:
• Comprehensive MS care
• Neurology
• Neuro-ophthalmology
• Neurotology (for ear disorders)
• Nursing
• Physical therapy
• MS research
• Attentive use of medications
Clinicians:
• Rehabilitation with therapists who
specialize in MS care
Stanley Cohan, M.D., Ph.D.,
Neurologist; medical director of
Providence Multiple Sclerosis Center
• Continence treatment for bladder
and bowel dysfunction
• Emotional support and psychological
counseling
• Opportunities to receive investigational
medicines through clinical trials
• Close coordination with your primary
care physician
• The Pacific Northwest Multiple
Sclerosis Registry Project, a database
created for epidemiological and
health services research
• An MS Network that allows physicians
to collaborate on MS treatments
Kiren Kresa-Reahl, M.D.,
Neurologist
Leah Gaedeke, FNP,
Multiple Sclerosis Nurse Practitioner
Kyle Smoot, M.D., Neurologist
Nurses:
Bobbi Lee Roth, RN,
Patient Care Coordinator
Sam Brighton, RN,
Clinical Case Manager
The Providence Multiple Sclerosis Center’s research is supported by generous donations from friends in
the community. If you are interested in learning more about supporting the center’s work, please contact
Joel Kelly, Director of Development, at (503) 216-2198.
Spring/Summer 2016, Issue #1 | Providence MS Newsletter
|7
Providence Multiple Sclerosis Center
9135 SW Barnes Road, Suite 461
Portland, OR 97225
Available on our Web site
at providence.org/brain:
• Physician directory: Get contact
information for all Providence Brain
and Spine Institute physicians.
• Upcoming events: Providence offers educational events throughout
the year. Check our online calendar
to view upcoming topics.
• Clinical trials: Find out about multiple clinical trials for investigational
treatments for MS, as well as
other clinical trials available through
Providence.
• Support groups: Get details on
support groups in Oregon.
• Additional resources: Our website
offers the latest information on
available programs and services;
educational toolkits; and links to
trusted sources of information.
News & Events:
Dr. Kyle Smoot is accepting
patients on the East Side
Dr. Kyle Smoot is now offering patient
appointments on Fridays, twice a
month, on the east side of Portland.
Providence Neurological
Specialties-East
5050 NE Hoyt St., Suite 315,
Portland, OR 97213
503-215-8580
Providence Multiple Sclerosis
Center is moving!
New clinic address, effective June 7:
9135 SW Barnes Road, Suite 461,
Portland, OR 97225
Bike MS: Willamette Valley
August 5-7, 2016
For more information, visit
www.nationalmssociety.org/BikeMS
O U R M I SS I O N
As people of Providence,
we reveal God’s love for all,
especially the poor and vulnerable,
through our compassionate service.
O U R C O R E VA L UES
Respect, Compassion, Justice,
Excellence, Stewardship
P ro v id e n c e M u l t ipl e
Scl e ro s i s C e n t e r
9135 SW Barnes Road, Suite 461
Portland, OR 97225
503-216-1150
www.providence.org/ms