Meet the Team and Stakeholders 

Project Steering Group

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Name: Fredrik Piehl, MD, PhD

Role: Principal Investigator

Location: Stockholm, Sweden

I have been working in the field of MS research since 1997 and clinically since 2000. Since 2008, I have been the head of the MS clinic at the Karolinska University Hospital and am leading a research group working on neurodegenerative aspects of MS, with support from the Swedish national research council. I have been involved in approximately 15 clinical trials, 4 as coordinating PI in Sweden and currently serve as chairman of the DMC for two phase III trials in neuromyelitis optica. I also served as chairman of the Swedish MS society in 2013-2015 and was the coordinating author of the recently released MS treatment guidelines by the Swedish Medical Products Agency 2015. For several years, I have reached out regularly to the MS community, giving lectures at MS patient courses and to the public 5-6 times per year, which has given me a good appreciation of the unmet needs in this patient group.

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Name: Annette Langer-Gould, MD, PhD

Role: Co-Principal Investigator

Location: Pasadena, CA

My training, experience and expertise spans the entire range of translational research, from the bench to observational studies to randomized controlled trials. My previous experience as Assistant Medical Director at Genentech, where I was responsible for the analysis of the rituximab MS clinical trials and design and FDA presentation of the ocrelizumab development program, provided me with unique insight into the pharmaceutical industry’s perspective as well as the strengths and limitations of clinical trials data. In my current roles at Kaiser Permanente, I have developed a population health perspective, leading a team that is developing, implementing and evaluating programs to provide high quality, affordable care for individuals with MS. My epidemiological research focuses on MS and pregnancy, predictors of prognosis and comparative effectiveness of MS therapeutics, as well as on the role of vitamin D, genotype, race/ethnicity and MS susceptibility.

Name: Anna Fogdell-Hahn

Role: Project Manager

Location: Stockholm, Sweden

My main research interest is in different aspects of autoimmunity, focusing on multiple sclerosis (MS) and genetic, etiologic and treatment-related issues. Since 2003, I have been heading an academic research laboratory responsible for routine analysis of anti-drug antibodies that also serves as a national laboratory for MS patients treated with interferon-beta or natalizumab (NAb lab). Since 2012, I have been the MS cohort leader in the EU-consortium ABIRISK, aiming at developing and validating ADA assays to monitor treatment immunogenicity for several biopharmaceutical used for treatment of chronic inflammatory diseases. I also have a long experience of working with the national MS register data and am responsible for the biobank connected to the NAb lab.

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Name: Thomas Frisell, PhD

Role: Biostatistician

Location: Stockholm, Sweden

I am a methods-oriented epidemiologist with a strong background in mathematical statistics. As a research coordinator in the Anti-Rheumatic Therapies in Sweden (ARTIS) project, I am responsible for planning and performing pharmacoepidemiological studies in Rheumatology. Dealing with biases, including confounding by indication, through proper study design and statistical analysis, while also realizing the limitations to the conclusions that we draw even after such corrections, are my primary specialty. Beyond using these skills in my research, I spend a lot of time teaching research methodology, courses in SAS programming, and monthly seminar series on challenging methodological topics.

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Name: Ingrid Kockum, PhD

Role: Bioinformatician

Location: Stockholm, Sweden

My research interests are focused on genetic risk factors for autoimmune diseases, especially in identification of genetic risk factors and how they interact with lifestyle exposures. I initially studies Type 1 Diabetes, but since 2005, I have focused on MS research. Lately, I have been studying the genetic control of immune response to viral infections in immunomodulatory treatments of MS. I have extensive research in handling large databases and am responsible for the database core facility at the Centrum for molecular medicine and another database with extensive data from different nationwide studies of patients with MS in Sweden. I have been teaching statistics at Stockholm University and have been included in several projects outside the field of genetics because of my expertise in statistics.

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Name: Jessica Smith, MPH

Role: Project Coordinator

Location: Los Angeles, CA

Since coming to Kaiser Permanente 3 years ago, I have been working extensively with Dr. Langer-Gould on her many MS studies, including research on MS and pregnancy and vitamin D and MS susceptibility. Prior to this, I was involved in chronic disease research at Columbia University, where I also obtained my Master’s in Public Health with a focus in epidemiology. When I am not engaging with patients or coordinating studies, I am actively spending my time hiking and rock climbing.

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Name: Anders Svenningsson, MD, PhD

Role: Principal Investigator

Location: Sweden

I have a broad experience in all aspects of the clinical management as well as neuroscience and neuroimmunology related to MS. My main quest is to develop the clinical management of patients with MS with emphasis on making the most efficient therapies available as early as possible for MS patients. The well-being and quality of life of the patients have always been an unquestionable foundation for my work. During the years 2002 – 2015 I developed the MS clinic at Umeå University Hospital, Västerbotten county. Västerbotten has been a leading center in the transformation of MS treatment in Sweden towards a wide use of rituximab because of its unique qualities of combining efficacy and patient-friendliness. I have been running two academic clinical trials involving rituximab and I am presently organizing a phase 3 randomized trial comparing rituximab with dimethyl fumarate as first-line treatment for newly diagnosed MS (NCT02746744).


Swedish Clinical Steering Group

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Name: Joachim Burman, MD, PhD

Role: Site Principal Investigator

Location: Uppsala, Sweden

I am a Senior Consultant Neurologist at Uppsala University Hospital Sweden and President of the Swedish Multiple Sclerosis Association. I received my medical degree from Uppsala University in 2001 and trained as a neurologist at the Hospital of Hudiksvall in Sweden. Since 2009, I have been working at Uppsala University Hospital where I specialize in neuroinflammatory disases such as multiple sclerosis. At present, I am leading the Hematopoietic Stem Cell Transplantation for Neurological Diseases Program at Uppsala University Hospital.

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Name: Katharina Fink, MD, PhD

Role: Site Principal Investigator

Location: Stockholm, Sweden

In my current role at the Karolinska University Hospital, I lead a team of health care professionals that is developing, implementing, organizing and evaluating value-driven care to provide the most effective care with the best quality, putting the patients’ needs and values in the center of our work. I have a broad experience in all aspects of clinical management, as well as in neuroimmunology and MS. My team and I have profound experience in observational to randomized clinical trials, focusing on MS and pregnancy. As a board member of the Swedish Multiple Sclerosis Society, I am in the position to influence policies regarding our patients with MS.

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Name: Martin Gunnarsson, MD, PhD

Role: Site Principal Investigator

Location: Örebro, Sweden

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Name: Jan Lycke, MD, PhD

Role: Site Principal Investigator

Location: Göteborg, Sweden

I obtained my MD at Gothenburg University in 1983 and a PhD from the Institute of Neuroscience and Physiology in 1993. In 1989, I became a board certified specialist in Clinical Neurology. Since 2014, I have been professor of neurology at the Sahlgrenska Academy, Gothenburg University and am currently head of the MS Centre at Sahlgrenska University Hospital. I was previously the Director of the Department of Neurology at Sahlgrenska University Hospital, President of the Swedish MS Association, and President of the Swedish Neurological Society. I was a Swedish delegate of the ECTRIMS council during 2006-2010 and chaired the ECTRIMS/RIMS meeting in 2010. I am currently a member of the EAN Scientific Panel of MS, member of the steering committee of the Swedish MS Registry, chairman of the board of MS therapies, Swedish MS Association, and Director of the Foundation for MS research in Sweden. For over two decades, I have been the principal and the national investigator of numerous MS clinical treatment trials; have published scientific papers in epidemiology, virology and immunology of MS; and am currently working with projects of biological markers for characterising MS immunpathogenesis, monitoring disease activity and therapeutic interventions of MS.

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Name: Petra Nilsson, MD, PhD

Role: Site Principal Investigator

Location: Lund, Sweden

I am a specialist in neurology since 1998 and have been working with MS patients since 1994. I took part in the Rebif studies in the 1990s and have been involved in clinical studies since then. In 2008, I presented my thesis on MS and am currently head of the team taking care of MS patients (1000 patients) at the Skåne University Hospital Lund-Malmö since over 10 years ago.

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Name: Jonatan Salzer, MD, PhD

Role: Site Principal Investigator

Location: Umeå, Sweden

I have been working with MS patients since 2007 and share the responsibility for the outpatient neuroimmunology function at the Umeå University Hospital in Northern Sweden together with four other physicians. As a tertiary referral center for the scarcely populated northern half of Sweden, our geographical conditions have given us the opportunity to develop an effective telemedicine activity which facilitates a close working relationship with the surrounding neurological deaprtments. Besides this study, I am also the site PI for RIFUND, a phase 3 RCT testing rituximab vs. dimethylfumarate for newly diagnosed MS. I have a profound interest in acute vertigo and post-lumber puncture headaches and have ongoing research projects in both those areas.

Name: Magnus Vrethem, MD, PhD

Role: Site Principal Investigator

Location: Linköping, Sweden

I am a clinical neurologist and professor in Neurology from the town of Linköping in the middle part of Sweden. The county consists of 500,000 inhabitants and around 800 MS patients. My previous research is in the areas of multiple sclerosis and polyneuropathies. I have been treating and am the examining physician in several studies of MS treatment. I have over 100 referee-judged articles published in medical journals. This study is important in finding out about the benefits/shortcomings and later possible side effects of Rituximab (anti-B-cell) treatment compared to the other disease modifying treatments of MS.

Scientific Advisory Board and Stakeholders

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Name: Gavin Giovannoni, MBBBCh, PhD, FCP, FRCP, FRCPath

Role: Consultant Stakeholder

Location: United Kingdom

I am an academic clinician who runs a translational MS research programme at Barts and The London School of Medicine. More recently I have become a MS champion with a focus on the holistic management of MS. My colleagues and I run a widely read, and increasingly influential, MS Research Blog, which has become a mouthpiece for change in MS . On a recent sabbatical I was horrified, from a global perspective, at the poor access people with MS have to effective treatments, particularly if they live in resource poor environments. I have therefore formulated,  and I am actively promoting, an Essential Off-label MS Disease-Modifying Therapy  L list to help improve global access to effective MS treatments. Rituximab is one of the high-efficacy drugs on this list. T his study will help the wider adoption of off-label prescribing and offer people with MS all over the world a highly effective treatment.

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Name: Gary Gronseth, MD

Role: Consultant Stakeholder

Location: Kansas City, KS

I am an evidence-based methodologist and neurologist with expertise and experience in the performance of systematic reviews and clinical practice guidelines. My expertise includes synthesis of evidence using the GRADE methodology and quantitative Bayesian techniques, the use of expert elicitation methods and Delphi processes to minimize bias in consensus development, and the formulation of actionable practice recommendations that are most likely to be implemented by clinicians.

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Name: Eva Helmersson

Role: Patient Stakeholder

Location: Sweden

I have been living with MS since I was diagnosed at age 23, and currently doing very well on rituxan, my third DMT. I see myself as an active, engaged and empowered patient who participates as an equal partner with my doctor in my healthcare process. I work part-time at Neuro Sweden, an organization for neurological diseases and disabilities, supporting patients and the community. I am active in my community, engaging in a project for the Swedish e-Health Agency and representing the Swedish MS registry as a patient. In 2010, I published my first book and am also the admin for the Swedish Facebook group MS Mabthera (Rituximab). I strongly believe in informing and educating patients about their medical condition and different options and treatments.

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Name: Jan Hillert, MD, PhD

Role: Consultant Stakeholder

Location: Huddinge, Sweden

As a physician since 1993, I have been responsible for the Multiple Sclerosis Center at Karolinska University Hospital since 2000, seeing MS outpatients twice a week. The center has approximately 1,400 patients, mostly with MS. I have been involved in over a dozen clinical trials in MS, including phases 0, II, III and IV.

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Name: Jens Johansson

Role: Patient Stakeholder

Location: Umeå, Sweden

I am 40 years old and come from the northern parts of Sweden. I have a family with two girls, 8 and 9 years old. I received my MS diagnose in 2001 and have tried three different medications during these 15 years with various results. The first five years was a roller-coaster, taking me from the top of the world to days just managing all the MS symptoms. During the last four years, I have received Mabthera (Rituximab), and with this treatment, I can finally have a very active life with my family and chase my goals. I frequently exercise and am back on top of the world. Today, I can work full time as a strategic development, leadership and board member.

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Name: Nicholas LaRocca, PhD

Role: Consultant Stakeholder

Location: New York City, NY

I am a psychologist who has worked in the field of MS for over 35 years. Since joining the National MS Society in 1997, I have been primarily responsible for Society funding of research on symptoms of MS, rehabilitation, epidemiology, psychosocial issues, and health policy. From 2011-2014, I served on the National Advisory Board on Medical Rehabilitation Research at the National Institutes of Health and as chair for one year. I am currently co-director of the Multiple Sclerosis Outcome Assessments Consortium, a Society initiative to develop and qualify a new measure of disability for use in clinical trials of MS therapies.

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Name: Tomas Olsson, MD, PhD

Role: Consultant Stakeholder

Location: Stockholm, Sweden

I have worked with clinical and experimental MS research for more than 30 years, publishing close to 500 articles in high-impact journals. I am currently the PI for six different projects on post-marketing surveillance of new MS drugs, including bio-banking of plasma and DNA, obtaining long-term data on efficacy and adverse events, and giving a basis for genes and lifestyle/environmental factors affecting MS.

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Name: Nazia Rashid, PharmD, MS

Role: Consultant Stakeholder

Location: Los Angeles, CA

I am a clinical pharmacist with health economics and outcomes research degree from USC. I have been leading and conducting various research at KPSC under the pharmacy umbrella for 12+ years, including retrospective database analyses, prospective, clinical intervention, translational research, formulary evaluations, value propositions, cost-effectiveness analyses, and patient reported outcomes. I love teaching and have been a preceptor for pharmacy residents for 10 years.

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Name: Jacques Roussel, Jr

Role: Patient Stakeholder

Location: Los Angeles, CA

Being diagnosed with MS has allowed me to relate and understand that anything can change. Being a patient of rituximab, while failing on copaxone and tysabri, has given me the firsthand experience on how the treatment can be effective. I am currently obtaining my Master’s in Social Work.

Name: Linda Roussel

Role: Patient Stakeholder

Location: Los Angeles, CA

Name: Jacques Roussel, Sr

Role: Patient Stakeholder

Location: Los Angeles, CA

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Name: Saty Satya-Murti, MD, FAAN

Role: Consultant Stakeholder

Location: Santa Barbara, CA

I have several years of experience in health policy, previously as a Medicare Evidence Development and Coverage Advisory Committee panel member and now as an independent consultant. My previous experience also includes serving on the payment policy subcommittee for the American Academy of Neurology and as a Medicare Medical Director for Kansas, Nebraska and Western Missouri. I have been actively involved in writing many local and regional medical policies and coverage articles. I am a local park docent, active grandpa and solar cooking aficionado.

Name: Julie Stachowiak, PhD

Role: Patient Stakeholder

Location: Santa Fe, New Mexico

I am an epidemiologist who is also living with MS. I have committed much of my career to working among vulnerable populations in international settings, primarily the former Soviet Union. Additionally, I co-founded a company, Xenex Disinfection Services, which has the primary goal of fighting hospital acquired infections. I am currently the Chief Epidemiologist for Xenex. As my background also contains a strong interest and education in human rights, I have a deep commitment to appropriate and affordable health care as a human right to people of all nations. For over 10 years, I have been active in the MS community and feel as if I have a good understanding of what people with MS want or need from MS treatments.

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Name: Deanna Stoner

Role: Patient Stakeholder

Location: Los Angeles, CA

I was diagnosed with MS over 15 years ago and finally stabilized after Dr. Langer-Gould started me on rituximab in 2013. I quickly discovered that there was very little information about rituximab, since it is not FDA-approved for MS, and after speaking with many other patients with the same issues, I became an administrator for the online support group “Rituxan for MS.” I am passionate about helping others with MS understand more about the risks of benefits of rituximab. I also enjoy doing yoga and spending quality time with my daughter, family and friends.

Patient-Centered Outcomes Research Institute Team

Name: Diane Bild, MD, MPH

Role: Program Officer

Location: Washington, DC

I am an associate director in the Clinical Effectiveness and Decision Science program at the Patient-Centered Outcomes Research Institute (PCORI). The program supports research that compares effectiveness and safety of alternative healthcare options to enable patients and providers to make informed healthcare decisions. I have 30 years of experience supporting and conducting research in chronic disease epidemiology and prevention and comparative effectiveness research and have authored more than 85 publications. I joined PCORI in 2013 after 24 years with the National Heart, Lung, and Blood Institute at the National Institutes of Health. I received my BA from the University of Illinois at Champaign-Urbana, my MD from the University of Illinois at Chicago, and my MPH in epidemiology at the University of Michigan. I trained in internal medicine at the Medical College of Wisconsin in Milwaukee. For fun, I sing in an a cappella group.

Name: Chinenye Anyanwu, PharmD, MPH

Role: Engagement Officer

Location: Washington, DC

I am an Engagement Officer in the Engagement department at PCORI and act as a liaison between the Engagement and Science teams to help manage PCORI’s research portfolio and support engagement of patients and stakeholders throughout the course of research projects. My experience spans patient education and training, conducting community based participatory research, and patient advocacy. I joined PCORI in 2016 after completing a fellowship in comparative effectiveness research and patient-centered outcomes research at the University of Maryland School of Pharmacy. I received my doctorate in pharmacy from the University of Connecticut and MPH (with a concentration in community-oriented primary care) from the George Washington University Milken Institute School of Public Health. I am an avid runner and enjoy competing in races for fun.

Name: Donna Gentry, MS

Role: Contract Administrator

Location: Washington, DC

Name: Jess Robb, MPH

Role: Program Associate

Location: Washington, DC

I am a Program Associate for the Clinical Effectiveness and Decision Science Program at PCORI where I help with the design and implementation of new funding initiatives, the evaluation of study proposals, and the active monitoring of research awards.  I am originally from Portland, OR, and I enjoy biking to work and reading outlandish science fiction.

Name: Jillian Nowlin, MA

Role: Senior Administrative Assistant

Location: Washington, DC

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