Providence MS Working toward a solution The NAAMS Registry was purposefully created to benefit African American people, who have not historically been adequately represented in efforts to improve the lives of people with MS. Too little is known about how MS uniquely affects African Americans, nor is there enough relevant information on MS available to African Americans seeking resources. We hope that participation in this registry and engagement with the African American community affected by MS will be powerful tools in shaping a solution. Our Purpose The NAAMS Registry was created by a group of African American neurologists who are nationally-recognized experts in MS. Our goal is to improve care for African Americans with MS by increasing patient and healthcare provider knowledge, while improving access to the best care. The registry also aims to increase opportunity for African Americans interested in being part of clinical trials, so that the therapeutic needs of African Americans with MS are better addressed in research and medication development. What happens once I sign up? We will send you surveys once or twice a year to learn about you, your disease, and the treatments or services you use to help manage your disease. A number will be assigned to represent your information, so your name will never be linked to your clinical information. All information you provide will be secured. You will also receive our MS Facts newsletter, which will communicate important infor- mation about MS as well as how the registry is being used. Who sees my information? Only registry researchers will see your information, but they will never know your personal identity. Your contact FALL/WINTER NEWSLETTER 2020 | ISSUE #10 The National African Americans with MS Registry by Stanley Cohan, M.D., Ph.D. IN THIS ISSUE 2 | Interview with Kimberlee Traczyk 3 | N.P. Role 5 | Enrolling Clinical Studies 8 | MS Support Group 10 | Program Overview …continued on page 4
Transcript
ProvidenceMS
Working toward a solution
The NAAMS Registry was purposefully created to benefit
African American people, who have not historically been
adequately represented in efforts to improve the lives of
people with MS. Too little is known about how MS uniquely
affects African Americans, nor is there enough relevant
information on MS available to African Americans seeking
resources. We hope that participation in this registry
and engagement with the African American community
affected by MS will be powerful tools in shaping a solution.
Our Purpose
The NAAMS Registry was created by a group of African
American neurologists who are nationally-recognized
experts in MS. Our goal is to improve care for African
Americans with MS by increasing patient and healthcare
provider knowledge, while improving access to the best
care. The registry also aims to increase opportunity
for African Americans interested in being part of
clinical trials, so that the therapeutic needs of African
Americans with MS are better addressed in research
and medication development.
What happens once I sign up? We will send you surveys once or twice a year to learn
about you, your disease, and the treatments or services
you use to help manage your disease. A number will be
assigned to represent your information, so your name will
never be linked to your clinical information. All information
you provide will be secured. You will also receive our MS
Facts newsletter, which will communicate important infor-
mation about MS as well as how the registry is being used.
Who sees my information? Only registry researchers will see your information, but
they will never know your personal identity. Your contact
FALL/WINTERNEWSLETTER2020 | ISSUE #10
The National African Americans with MS Registryby Stanley Cohan, M.D., Ph.D.
I N T H I S I S S U E
2 | Interview with Kimberlee Traczyk
3 | N.P. Role
5 | Enrolling Clinical Studies
8 | MS Support Group
10 | Program Overview
…continued on page 4
2 | Fall/Winter, Issue #10 | Providence MS Newsletter
Today, I had the opportunity to interview Kimberlee Traczyk, who recently joined Providence MS Center.
How long have you been at Providence and where did you work prior to coming here?I’ve been at Providence for more than a year now. I previously worked at Northwest Primary Care and, prior to getting my Bachelor’s degree in Nursing, I worked at a pain management clinic in Las Vegas, NV.
So, what is your role as one of the nurses?My role in the clinic is versatile as a triage nurse. I assess our patients’ symptoms and concerns to determine whether they require urgent evaluation or if input from their physi-cian would be most helpful. I provide education on neuro-logical conditions such as MS, stroke, migraines, seizures, etc. I also ensure patients complete their pre-infusion requirements so that their infusions go smoothly. Did I mention paperwork?
Why did you decide to become a nurse?One of my best friends had a baby while we were in high school, and I was there for her every step of the way. It was the first birth I ever observed, and that’s the very moment I knew I wanted to be a nurse. I watched in awe of the nurses who swooped in to make sure the baby was healthy and ready to meet the world. It all happened so fast, yet it is still one of my most vivid memories.
A diagnosis of MS can be overwhelming, and there is a lot is learn about the disease. So, what are some resources that you provide patients?One of the best resources for any one (not just newly diag-nosed patients) is the National MS Society website. The information they provide is simplistic, yet extremely infor-mative. Their website is well organized with categories ranging from COVID-19 and MS to Living Well with MS.
Providence also has support groups for people with MS and a group for caregivers of people with MS.
What advice do you have for patients?Don’t be afraid to ask questions! When my role is reversed and I am the patient, I have plenty of questions when it comes to my medical care. I try to remind myself that ask-ing the healthcare provider questions can prevent “google mishaps” later on. It’s always better to ask your healthcare team any questions about your care, medications, treat-ment plan, etc. to ensure that everyone is on the same page. You are an integral part of your health, and the first step is making sure you understand the plan and the rea-soning behind it.
What advice do you have for caretakers?Patience is a virtue. It’s something I say to myself and family members often and is a great reminder that there is always a reason to be patient and kind to others. Difficult patient situations are sometimes unavoidable, but sometimes those situations call for a little more thoughtfulness. I like to ask myself “how would I feel if this patient were a member of my family?” It’s a good way to remind myself that fear and pain can often influence patients and their treatment. Regardless, I still want the patient to receive the best care and have a positive experience.
What do you like to do outside work?Outside of work I enjoy cooking, hiking, kayaking, and spending time with my boyfriend and two kitties.
Who would you invite to your dream dinner party (alive or dead)? Matthew McConaughey or Prince.
What life experience has taught or changed you the most?Moving to Oregon in 2018 was a huge change for me and I am grateful to live in this beautiful state. I was born and raised in Las Vegas, NV, and this was a great change for me. Without family and friends in close vicinity, I was challenged to depend on myself more than ever. So far, it has been a great experience that has helped me grow. n
Providence Brain and Spine Institute | Team Member Spotlight
Interview with Triage nurse, Kimberlee Traczyk
Fall/Winter, Issue #10 | Providence MS Newsletter | 3
History of the Nurse Practitioner professionThe purpose of this article is to help our MS patients under-
stand the role of a nurse practitioner in the field of multiple
sclerosis specialty care in the Providence MS Center. In order
to set the frame work of how I practice, let me take a mo-
ment to review the impetus for the NP role development
in the 1960’s and 1970’s. The trends during this time led
many physicians into specialty practices, leaving many areas
underserved medically. Socially and politically, the US was
changing rapidly due to the Vietnam War, domestic unrest,
and movements promoting racial and gender equality were
underway. There was a heightened demand for accessible,
affordable, and sensitive health care. The woman’s move-
ment promoted nursing and the lack of awareness as an
undervalued and underutilized profession. Further, the cost
of healthcare was increasing at an annual rate of 10% to
14%. Hence, the birth of the physician assistant and nurse
practitioner role, it was fueled by an emphasis on ambula-
tory and family centered care as exemplified by demon-
stration projects such as the Yale Family Care Project. The
landmark event was the first pediatric NP program launched
by Loretta Ford and Henry Silver at the University of Colo-
rado in 1965. Graduating NP’s were utilized to improve
patient access and this was proven to do so by a margin
of more than 30%. The role continued to gain steam into
the 80-90’s with specialty certification beyond pediatric
and family medicine, nurse midwifery, acute care, woman’s
health, geriatric, and psychiatric certification was devel-
oped. Independent practice and licensure of NP’s vary state
to state, but to date many states will independently license,
and recognize nurse practitioners as primary care providers
without oversight from physician mentorship.
I was employed by Providence in 2009, to assist this pro-
gram in providing an ongoing comprehensive care model.
My role in the center today, is to provide an additional
layer of medical expertise to all of our patients here in the
practice, whether it is as simple as helping a patient better
understand the new disease modifying therapy recommen-
dations provided by their paneled neurologist, reviewing
an MRI in follow-up, managing a simple bladder issue, or
actively switching therapy for a patient who is having a
relapse. I am here to answer questions and help ease our
patients’ way as they navigate the complexities of living
with MS and struggle through self advocacy.
Education/TrainingI have a graduate degree as a master prepared nurse in the
field of Family practice with a focus on leadership. I am na-
tionally certified as a Family Nurse Practitioner. This certifica-
tion in the state of Oregon allows me to bill and perform
care as any other clinician in our clinic does.
There was no additional training in the field of Neurology,
other than the two year clinical mentorship I received from
a Multiple Sclerosis and Neurophysiology physician. I contin-
ued to learn the didactics and clinical nuances of specialty
Neurology for the next 6 years practicing in a private
Neurology practice in Virginia, as well as in the acute care
setting as a Trauma nurse practitioner at OHSU.
Eventually, I came to work for the Providence Multiple
Sclerosis Center, started by our wonderful medical director
and my second mentor, Dr. Cohan, who at the time was
growing our center by leaps and bounds with more than
1000 MS patients. During my early role development, I
saw new consults for our center, as well as provided ongo-
ing symptom management and follow-up care for our
patient population. As our center continued to grow my
role evolved and I continue to see our patients in follow-up,
and helped the other MS specialists manage and provide
N.P. Role by Leah Gaedeke, F.N.P.
Providence Brain and Spine Institute
4 | Fall/Winter, Issue #10 | Providence MS Newsletter
supportive care to those patients who were in an acute
relapse, in need of urgent symptom management, and
early education surrounding living well with MS. I enjoy
educating patients on a wellness path with complementary
medicine, nutritional support, and the importance of daily
exercise to promote a healthier lifestyle living with MS. I feel
my expertise provides a comprehensive compliment to
the medical knowledge from the expert physicians I work
beside. We work collaboratively to be sure all patients
receive the best level of care they deserve.
Additional rolesI lead a monthly MS support group for our patients here in
the MS center, as my passion lies in education surrounding
this disease. I serve on the Board of Trustees for the
local chapter of the MS Society and on a sub-committee for
community development. I continue to support our research
program as an investigator for our various research proto-
cols. I provide expert opinion in the development, and mar-
keting of many different MS therapies. I have spoken for
different advocacy programs regarding MS management. I
also provide clinical mentorship to new nurse practitioners
to the field of Neurology.
My career continues to expand as does my role and knowl-
edge base here in the center. I have now worked in the
specialty field of Neurology for 17 plus years, and am proud
to acknowledge I love what I do and feel blessed to have
fallen into the field of Neurology under the guidance of
amazing physician mentors. n
Providence Brain and Spine Institute
The National African Americans with MS Registry…continued from page 1
N.P. Role…continued from page 3
information will only be used to send you follow-up
surveys, registry information, and the newsletter.
Your personal information will never be used in reports
or given to insurance companies.
How is information about me used?The information you and other persons with MS provide will
only be used for research purposes. The data will be used
to learn about and understand what factors may make
African American people more likely to develop MS, how
their symptoms start and progress, and the effectiveness
of MS treatments in African Americans. Individual data will
never be used in scientific publications or presentations.
Participation is voluntary You are not required to answer all survey questions,
and you will not receive payment for participating.
You may choose to stop your participation at any time. If
you decide to stop taking part, please notify us by using
the NAAMS Registry contact information. Information that
you have already provided will still be included as part of
the registry, but no further information about you will be
collected. Whether or not you remain a participant, your
information will never be disclosed. n
How do I participate? To sign up or learn more about the registry, visit* us at www.naamsr.org
* Does not work in Internet Explorer. Please use Chrome, Safari, Firefox or other browser.
Clinical Studies | Enrollment
For more information or to connect with the contacts for any of these trials, please call Jennifer Geranios at 503-216-2736.
Evaluating the Potential Role of Melatonin in Subjects With Relapsing Multiple Sclerosis
Description: To date, there is no published data on the role of melatonin supplementation or the appropriate dosage for patients with multiple sclerosis. Because of the potential benefits of melatonin, this pilot study will be an exploratory investigation to evaluate the effect of supplementing melatonin in subjects with multiple sclerosis who are taking an oral disease modifying therapy (DMT) for 6 months or longer. It is our intent that the results of this study will support the rationale and be a prelude to a larger trial which can focus on clinical efficacy of melatonin therapy outcomes.
Sponsor: Providence Health & Services Principal Investigator: Kyle E Smoot, M.D. Contact: Hannah Voss
Traditional versus Early Aggressive Therapy for Multiple Sclerosis (TREAT-MS) Trial
Description: The Traditional versus Early Aggressive Therapy for MS (TREAT-MS) trial is a pragmatic, randomized controlled trial that has two primary aims: 1) to evaluate, jointly and independently among patients deemed at higher risk vs. lower risk for disability accumulation, whether an ‘early aggressive’ therapy approach, versus starting with a traditional, first-line therapy, influences the intermediate-term risk of disability, and 2) to evaluate if, among patients deemed at lower risk for disability who start on first-line MS therapies but experience breakthrough disease, those who switch to a higher-efficacy versus a new first-line therapy have different intermediate-term risk of disability.
Sponsor: Patient-Centered Outcomes Research Institute (PCORI) Principal Investigator: Stanley Cohan, M.D., Ph.D. Contact: Hannah Voss
North American Registry for Care and Research in Multiple Sclerosis (NARCRMS)
Description: The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) is a physician/clinician based registry and longitudinal database of clinical records and patient-centered outcomes. The goal is to create a large clinical database for researchers to study the disease course and the markers that predict MS disease progression.
Sponsor: Consortium of MS Centers (CMSC) Principal Investigator: Stanley Cohan, M.D., Ph.D. Contact: Alaina Randerson
Fall/Winter, Issue #10 | Providence MS Newsletter | 5
Clinical Studies | Enrollment, continued
Measurement of Relaxin in the Serum and Cerebrospinal Fluid of Subjects With and Without the Relapsing Form of Multiple Sclerosis
Description: This study will evaluate relaxin levels in patients with multiple sclerosis.
Sponsor: Providence Health & Services Principle Investigator: Stanley Cohan, M.D., Ph.D. Contact: Hannah Voss
Evaluating the Efficacy and Safety of Transitioning Patients From Natalizumab to Ocrelizumab (OCTAVE)
Description: The primary objective of this study is to assess the efficacy of Ocrelizumab (OCR) in Relapsing Multiple Sclerosis patients who have been previously treated with natalizumab (NTZ) by evaluating relapse rate, progression on MRI and disability progression.
Sponsor: Providence Health & Services Principal Investigator: Kyle E Smoot, M.D. Contact: Genevieve Rollier
Pacific Northwest Multiple Sclerosis Registry
Description: The purpose is to measure MS prevalence in the Pacific Northwest and to create a database for ongoing epidemiological and health services research.
Sponsor: Providence Health & Services Principle Investigator: Stanley Cohan, M.D., Ph.D. Contact: Tamela Stuchiner at 503-216-1022 or visit www.pacificnwms.org
Providence Anti B-cell Therapy Registry
Description: The goal is to collect information from patients receiving anti B-cell therapies, including ocrelizumab, ofatumumab, rituximab, and rituximab-abbs, for the treatment of MS to assess their long term utilization, safety, tolerability and efficacy.
Sponsor: Providence Health & Services Principle Investigator: Kyle Smoot, M.D. Contact: Lois Grote
6 | Fall/Winter, Issue #10 | Providence MS Newsletter
Description: The goal is to collect information from patients receiving S1P therapies, including fingolimod, siponimod, and ozanimod, for the treatment of MS to assess their long term utilization, safety, tolerability and efficacy.
Sponsor: Providence Health & Services Principle Investigator: Kyle Smoot, M.D. Contact: Lois Grote
A Systems Approach to Understanding Disease Processes in MS
Description: The main purpose of the study is to improve the understanding of MS and to look at the genetic factors that may influence how MS progresses. This study will collect blood and stool samples and information from survey questions and MS-related assessments from study patients over 15 months of study participation.
Sponsor: Providence Health & Services Principle Investigator: Stanley Cohan, M.D., Ph.D. Contact: Genevieve Rollier
Observational study Assessing the Feasibility of the MS Performance Test for Assessing Functional Performance in MS patients (MSPT)
Description: The primary objective is to evaluate the feasibility of the Multiple Sclerosis Performance Test (MSPT) in a clinical care setting when used by participants with Multiple Sclerosis.
Comparing the Risk and Severity of Infusion-related Reactions in patients Premedicated with Cetirizine versus Diphenhydramine prior to Ocrelizumab infusions (PRECEPT).
Description: This 6 month randomized controlled pilot study will determine whether there is some evidence that Cetirizine is better than Diphenhydramine without an increase in infusion related reactions (IRR’s).
For more information on clinical trials and research, visit us at oregon.providence.org/our-services/c/clinical-trials-brain or clinicaltrials.gov
A Study of Suboptimally Controlled Participants Previously Taking Injectable Disease-modifying Drugs for Relapsing Forms of Multiple Sclerosis (CLICK-MS)
Description: This study will evaluate the effectiveness and safety of cladribine tablets in patients with relapsing MS, who switched to cladribine tablets after suboptimal response to injectable disease modifying therapies
A Study of Suboptimally Controlled Participants Previously Taking Oral or Infusion Disease-Modifying Drugs for Relapsing Forms of Multiple Sclerosis (MASTER-2)
Description: This study will evaluate the effectiveness and safety of cladribine tablets in patients with relapsing MS, who switched to cladribine tablets after suboptimal response to injectable disease modifying therapies
Kiana Oskooii, R.N., B.S.N., Clinical Support Specialist
Kimberly Tracyk, R.N., B.S.N., Clinical Support Specialist
Nora Vetto, R.N., M.S.N., Clinical Support Specialist
OUR SERVICES:
• Highly advanced diagnostics
• Personalized treatment plans
• Attentive use of medications
• Rehabilitation with therapists who specialize in MS care
• 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 data-base created for epidemiological and health services research
• An MS Network that allows physicians to collaborate on MS treatments
• Community and provider education forums throughout Oregon
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, proac-tive, focused treatment that minimizes the effects of MS on your life. Patients benefit from comprehensive 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.
Providence Multiple Sclerosis Center
Thanks to clinical research, people with MS are living longer, stronger, healthier lives.Learn how you can help Providence Multiple Sclerosis Center. Call Dawn Johnston: 503-216-2198.
• Comprehensive MS care
• Neurology
• Neuro-ophthalmology
• Nursing
• Physical therapy
• MS research
• Support and wellness programs
Providence Multiple Sclerosis Center team
Our Providence Multiple Sclerosis Center team specializes in:
