Global NMOSD and MOGAD Conference will take place on 2/3 Aug 2021
The Zoom link can be found here
Please email the iWiMS Secretary (Fabienne.firstname.lastname@example.org) if you would like to receive a calendar invite.
Global Epidemiology Conference – July 26/27 2021
Interested to learn more about Neuroimmunology? Visit our interesting news and links tab for information on monthly seminars and journal clubs
Global Epidemiology Conference – April 26/27 2021
Genetics Conference March 8/9 2021
Our Speaker was Prof Cinthia Farina from the Institute of Experimental Neurology (INSpe) and Division of Neuroscience,
San Raffaele Scientific Institute, Milano, Italy
Peripheral blood mononuclear cells (PBMCs) bear specific dysregulations in genes and pathways at distinct stages of multiple sclerosis (MS) that may help with classifying MS and non-MS subjects, specifying the early stage of disease, or discriminating among MS courses. Here we describe an unbiased machine learning workflow to build MS stage-specific classifiers based on PBMC transcriptomics profiles from more than 300 individuals, including healthy subjects and patients with clinically isolated syndromes, relapsing-remitting MS, primary or secondary progressive MS, or other neurological disorders. The pipeline, designed to optimize and compare the performance of distinct machine learning algorithms in the training cohort, generates predictive models not influenced by demographic features, such as age and gender, and displays high accuracy in the independent validation cohort. Proper application of machine learning to transcriptional profiles of circulating blood cells may allow identification of disease state and stage in MS.
Global Epidemiology Conference – January 25/26 2021
NMOSD/MOGAD scientific group: Patient information webinar – December 14/15 2020
A few more questions from the session:
- Is it possible to alter the immune system to not attack MOG, instead of suppressing the immune system?
- Drug treatments for MOG – how far have we got with them? What do you think of fasting to reset the immune system? In theory it should be possible in the future to make people tolerant to MOG and to stop producing antibodies There is a lot of research work in other diseases on this ‘tolerisation’ therapy and so this is something for the future. Resetting the immune system can be a term for using quite aggressive therapy to remove ‘all’ current immune cells and so this may be used in bad diseases when all else fails and not really something to be used in MOGAD unless all else fails and the risks and unknowns are well understood.
- Why do different countries have different standard treatment plans for their NMO patients? E.g. in the U.K. it is standard to place patients on a combination of oral steroids and azathioprine, whereas in the U.S. it is standard to get the patient off oral steroids as soon as possible. There are different preferences and uses across many countries across the world. This will relate to a number of factors: the availability of drugs; whether they are licensed, their costs, as well as medical views. Prednisolone is often enough to hold some people stable with NMO and in Japan we understand many patients do well on low dose prednisolone alone. There is always a trade off between using drugs that have been around for decades and have long safety data and new more effective drugs with less safety data. Additionally often insured patients in the US often have more access to new drugs.
- How do you treat nerve damage in the stomach occurring from the NMO disease? We are not aware of any evidence for nerve damage to the stomach.
- What happens if the Rituximab treatment damages the nerves in your legs? There might be rare cases of possible Rituximab peripheral neuropathy, but that it is difficult to be sure if the Rituximab is the cause. We do not have any experience but an expert in peripheral nerve disease maybe able to advise
- Is there any treatment for the nerve damage and severe pains from it? There is no treatment currently to reverse nerve damage but the pain teams are the best people to advise on pain symptom management. Pain is a recognised complication in some sorts of NMO attacks and the pain can be difficult to treat.
More on COVID-19 Vaccine
Consideration 1: Safety. None of the current vaccine candidates are live vaccines. They use either viral RNA or viral vectors to train the immune system to recognise and create antibodies to COVID-19. There is no current reason to expect that this vaccine will be unsafe for people who are immunosuppressed. In some countries people with chronic neurological conditions such as NMOSD, MOG antibody disease and MS are being given priority to receive the vaccine as they are considered to be at a higher risk for more severe COVID-19 infection if they contract the virus. Additionally, regarding the effect vaccines on NMOSD, there is some evidence from a study by Mealey et al. in 2018 that if you are stable on your treatment for NMOSD you are not at increased risk for a relapse after receiving a vaccine (this study looked at other vaccines e.g. the influenza vaccine).
Consideration 2: Efficacy. The efficacy of vaccines in immunosuppressed populations is unknown. There is some data to suggest that immunosuppression reduces your response to vaccines and so you may either not develop full immunity or it may take a longer period of time for full immunity to occur. However, these studies tested the immune response based on blood levels only and did not test whether this translated to an increased rate of infection and so some immunity is likely to be better than no immunity. Additionally, as more and more people are vaccinated the overall risk is reduced for the whole population. However, we recommend that even if you do get the vaccine you continue to follow your local government guidelines regarding social distancing and safety as the immunity you achieve may be variable depending on the type of treatment you are on. Finally, if you are receiving treatment such as Rituximab or another infusion you should speak to your local healthcare provider as the timing of the vaccine in relation to your treatment will be important to ensure you get the best possible immune response to the vaccine.
Overall, the decision should be individualised and may depend on a variety of factors (your overall risk profile, treatment and personal preference). You should speak to your local health care provider if you have any concerns.
Do the RNA vaccines have possible long term side effects regarding genetic changes? Vaccines train the immune system to recognise pathogens by stimulating the production of antibodies. Some vaccines use viral RNA, that is recognised as a pathogen by the human immune system, to elicit this response. However, this does not result in genetic modification of the person receiving the vaccine.
If you are looking for patient support group: NMO Sprectrum UK (UK), The Guthy Jackson Foundation (USA), Multiple Sclerosis Research Australia (Australia), the National Multiple sclerosis Society (USA)
MS COVID-19 Meeting – November 18/19 2020
In the November 18 2020 iWiMS COVID-19 meeting Dr Ana Zalbaza (Spain) gave an update on MS and COVID-19 from the CEMCAT registry.
We were also fortunate to have Dr Helen Su (USA) describe the recent study she led on autoantibodies to type I IFNs in patients with COVID19. Whilst this part of the talk is not available online, you can read about her study here:
Dr Steve Simpson-Yap (Australia) also gave an update on the MSIF Global Data Sharing Initiative and their COVID-19 data to-date.
Please note, these videos are intended for a medical and scientific audience for educational purposes. Please acknowledge the speaker if you reference their work.
Global Epidemiology Conference – November 9/10 2020
MS COVID-19 Meeting – August 26/27 2020
For our August meeting we were joined by Dr Alba Grifoni who spoke about the T cell immune response in COVID 19. Dr Grifoni is the first author of a paper published in Cell describing the T cell response in COVID-19
We were also joined by Prof Magd Zakaria who spoke about MS and COVID19 in Egypt.
We again thank both of our speakers for their time and generosity in sharing their data with our community.
MS COVID-19 Meeting – July 15/16 2020
The preliminary program will include: Jan Hillert (Sweden): anti-CD20 tre
The iWiMS July 15 2020 COVID-19 meeting was hosted by Fabienne Brillot. We heard an update from Celine Louapre (French Registry), specifically talking about COVID-19 in people with NMOSD. Amber Salter (COViMS Registry US) gave an update on the US experience. Both speakers spoke to comorbidities, and treamtent impacts.
The formal talks were followed by a discussion of DMT considerations given the data that has been presented and published over the last months. Together with a discussion of possible impact of steroid exposure on COVID outcomes. We again thank all of our speakers for their time and generosity in sharing their data with our community.
MS COVID-19 Meeting – July 1/2 2020
In the July 1 2020 iWiMS COVID-19 meeting Dr Jeanne Billioux (NIH, USA) gave an update on COVID-19 treatments, clinical trials, and vaccines in development. We thank her for this excellent summary of the current state of play.
MS COVID-19 Meeting – June 17/18 2020
In the June 17 iWiMS COVID-19 update Dr Ruth Dobson (QMUL, UK) asks the question: What role does VitaminD play in COVID-19 outcomes? Dr Kate Fitzgerald (JHU, USA) presents data from a collaborative effort with Cemcat looking at predictors of COVID-19 infection in people with MS. Louise Rath, clinical nurse consultant at Aflred Health (AU) describes their experiences of rapid infusion regimens for natalizumab and ocrelizumab in the time of COVID-19.
Also available in the iWiMS Virtual Conference Podcast.
MS COVID-19 Meeting – June 3/4 2020
After a fortnight break, Anne-Katrin Pröbstel hosts latest COVID-19 meeting. We welcomed Sandra Amor (The Netherlands) who gave an update on innate immune evasion by the SARS-CoV-2 virus. We also had updates from three registries including: Celine Louapre (FR) – French MS COVID-19 Regristry, Afagh Garjani (UK) – UK MS Register, Amber Salter (US) – COViMS Registry. Again we thank all of our speakers for sharing their expertise and experience.
MS COVID-19 Meeting – May 20/21 2020
Our May 20/21 meeting was hosted by Emmanuelle Waubant. We welcomed Gavin Giovanonni (UK) discussing anti-CD20 therapies and vaccine readiness. For Gavin’s up-to-date patient information go to http://www.ms-selfie.org. Jan Hillert (SE) gave an update on the Swedish Registry data. There is a predonderance of patients in Rituximab in the Swedish Registry who have tested positive for COVID-19, but this could just be due to ascertainment bias. Georgina Arrambide (SP, CEMCAT) spoke about neurological complications of COVID-19, and mechanisms of involvement. Seth Levin (US, Columbia University NYC) spoke about the MS ReCOV study. For people in the US who wish to participate in the MS ReCOV study, links can be found here or here
MS COVID-19 Meeting – May 13/14 2020
Our May 13/14 meeting was hosted by Fabienne Brillot. We welcomed David Baker (UK) who spoke about the biology of COVID-19 in relation to MS therapies. Dr Baker has co-authored a paper found here, describing what he discussed today. Nick Rijke representing MSIF, updated us regarding the MS Data Alliance MS COVID-19 Registry effort. Jan Hillert (SE) gave an update on MS COVID-19 cases from the Swedish Register. Celine Louapre (FR) with updates from the French Registry including both MS and NMOSD patients. Amber Salter (COViMS Registry). Lauren Krupp (USA) presents the latest data from New York.
MS COVID-19 Meeting – May 6/7 2020
Our May 6/7 meeting was hosted by Dr. Georgina Arrambide. We welcomed Heinz Wiendl (DE) who spoke about MS, COVID-19 and B-cell depleting therapies. Anneke Van der Walt (AU) presented data on Australian and New Zealand MS COVID-19 patients; and presented the MSBase Registry effort to capture MS COVID-19 patient data. Maria Pia Sormani (IT) presented the latest data from the MuSC-19 Registry. Finally Cerlia Oreja-Guevara gave an update on the Spanish MS COVID-19 registry data.
MS COVID-19 Meeting – April 29/30 2020
Our April 29/30 meeting was hosted by Dr. Anne-Katrin Pröbstel. We welcomed Anne Cross, Jeffrey Cohen, and Kate Fitzgerald (USA), Farinaz Safavi (Iran ), and Nikos Evangelou (UK). Michael Wilson also spoke on serology tests of patients with COVID19. Scott Zamvil spoke on immune responses to COVID19 under DMTs.
MS COVID-19 Meeting – April 22/23 2020
Our April 22/23 meeting was hosted by Marwa Kasey. We welcomed Jeffrey Bennett who explained the immunological aspects of COVID-19 and issues related to MS therapies. Data from China presented by Fu-Dong Shi (China). Lauren Krupp presents updates from New York, and reassuring data on pediatric COVID-19 MS cases. Further updates from Celine Louapre (France), Rick Rijke (MISF), Ana Zabalza (Barcelona), Amber Salter (USA), Celia Oreja-Guevara (Madrid).
MS COVID-19 Meeting – April 15/16 2020
Our April 15/16 meeting was hosted by Emmanuelle Waubant. Speakers included Jan Hillert (SE), Celine Louapre (FR), Magd Zakaria (EG), Marco Aurélio Lana Peixoto (BR), Amber Salter (US), Ellen Mowry (US), Jeff Cohen (US), Maria Trojano (IT), Nick Rijke (MSIF), Mar Tintore (ES), Kerstin Hellwig (DE), Lauren Krupp (US), Miriam Mattoscio (UK), Aksel Siva (TR).
Globally, we estimate that there are ~600 people with MS who have been infected with COVID-19. Discussions included progress of MS COVID-19 Registries, sharing of preliminary MS COVID-19 registry data, information on pediatric cases, DMT use strategies in the context of COVID-19 particularly cladribine.
MS COVID-19 Meeting – April 8/9 2020
On 8 April Hosted by Anne-Katrin Proebstel (CH), Bruce Bebo (US), Jeff Cohen (US), Magd Zakaria (EG), Mar Tintore (ES), Celine Louapre (FR) Jan Hillert (Sweden), Richard Nicholas (UK), Kerstin Hellwig (DE), Maria Trojano (IT), Maria Pia Sormani (IT), Liesbet Peeters (MS Global Data Sharing Initiative), and Ellen Mowry (US) shared with us Registry updates and further COVID-19 case information.
MS COVID-19 Meeting – April 1/April 2 2020
Recording of the 2nd MS and COVID-19 discussion hosted by iWiMS.
Discussions included introduction of various global registry efforts being put together to capture treatment and outcomes data on people with MS who have tested positive for COVID-19.
Clinical Neurology conference – Feb 27/ Feb 28 2020
A/Prof Charo Blasco Quílez, Hospital Universitario Puerta de Hierro, Madrid, Spain. “Concurrence of a brain tumor and MS: A challenge for treatment. “
Prof Ayse Altintas, KOC University, Istanbul, Turkey. “ A multicentre international study to evaluate different aspects of the relationship between MS and pregnancy.”
Neuro-ophthalmology conference – Feb 10/ Feb 11 2020
Dr. Frederike Cosima Oertel, University of California San Francisco, USA
Title: Optical coherence tomography in NMOSD: Results from the CROCTINO cohort
Dr. Sara Collorone, University College London, London, UK
Title: Visual Function and Brief Cognitive Assessment for MS (BICAMS) in Optic Neuritis–Clinically Isolated Syndrome Patients
Pediatric Demyelinating Disease Conference – Feb 6/7 2020
Ermelinda De Meo, Institute of Experimental Neurology, IRCCS Ospedale San Raffaele, Italy. Neuroimaging in the CNS white matter.
Leslie Benson, Boston Children’s, Harvard Medical School, Boston, Massachusetts. HLH in children.
Neuroimaging Conference – Jan 28/Jan 29, 2020
Frederique Boonstra, Monash University, Melbourne, Australia
Tremor in multiple sclerosis with a neuroimaging perspective
Myrte Strik, University of Melbourne, Melbourne, Australia & VU University, Amsterdam, Netherlands
Investigation of upper and lower limb disability progression in multiple sclerosis with longitudinal functional network dynamics
Antje Bischof, UCSF, San Francisco, CA, USA
Legacy brain scans reveal rapid cord atrophy rates before conversion to secondary progressive multiple sclerosis
Global Epidemiology Conference – 27/28 January 2020
Dr Vilija Jokubaitis, PhD., Senior Research Fellow, Department of Neuroscience, Monash University, Australia and Honorary Senior Research Fellow Alfred Hospital, Melbourne, Australia
Title: Pregnancy, CIS and MS in the modern day
Dr Sarah Morrow, M.D., M.S.C.E., Associate Professor, Department of Clinical Neurological Sciences, Western University, London, Ontario, Canada
Title: Treating acute optic neuritis with bioequivalent doses of oral or intravenous steroids
Dr Jo Lane, Ph.D., Research Fellow, Research School of Public Health, Australian National University, Canberra, Australia
Title: My first year in MS research: reflections and the next steps”
NMOSD and MOG-Ab associated disorders – 11/12 December 2019
Dr Romina Mariano, MBBCh (Wits), DPhil Candidate and Honorary Clinical Fellow, Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, The Queen’s College, University of Oxford
Title: Involvement of the spinal cord in MOG-Ab disease, NMOSD and MS
Dr Sara Samadzadeh, MD, Guest Researcher, University of Southern Denmark and Neurology Resident and post-doctoral research fellow in university hospital Düsseldorf
Title: Association of serum IgG autoantibodies specific for myelin oligodendrocyte glycoprotein (MOG-IgG) with optic neuritis
Clinical Trials Conference – 20/21 November 2019
Dr. Ellen Mowry, Johns Hopkins University
Title: Investigator-initiated clinical trials in MS: the good, the bad, and the ugly
Dr. Riley Bove, University of California San Francisco
Title: Pilot trial of hormone therapy for women with multiple sclerosis
Dr. Anneke van der Walt, Monash University
Title: Cross-over trial design: lessons learnt from a Botox-study for upper limb tremor in MS
Global Epidemiology Conference – 21 October 2019
Fardowsa Yusuf, MSc
Fatigue, sleep disorders, anaemia and pain in the multiple sclerosis prodrome.
Tingting Zhang, MD, PhD
Effects of comorbidities on short-term functional decline among nursing home residents with multiple sclerosis.
Neuroimaging Conference – August 7, 2019
The first inaugural Neuroimaging Interest Group conference.
Dr Rosa Cortese, Clinical Research Associate at UCL Institute of Neurology
The role of imaging biomarkers in different demyelinating disease phenotypes
Dr. Burcu Zeydan
Pittsburgh compound-B PET imaging in MS
Global Epidemiology Conference – July 15, 2019
Chaired by Dr Ellen Mowry, iWiMS Global Epidemiology Conference
Our speakers included:
Deanna Saylor, MD, Assistant Professor of Neurology, Johns Hopkins University/Visiting Lecturer & Consultant, University of Lusaka (Zambia). MS in sub-Saharan Africa: Absence of Disease or Absence of Expertise?
Charity Evans, PhD, Associate Professor, College of Pharmacy and Nutrition, University of Saskatchewan. Adherence in MS: a model for other chronic diseases?
Mitzi Williams, MD, Neurologist & MS Specialist, Atlanta, GA. Addressing Diversity in MS: The African American Experience in the US
16 May 2019 – Chaired by Dr Vicki Maltby, inaugural iWiMS Global Genetics and Genomics conference.
1 April 2019 – Chaired by Dr Ellen Mowry, inaugural iWiMS Global Epidemiology Conference