Live/ COVID-19: Coronavirus and Duchenne & Becker muscular dystrophy

A regularly updated news feed on the COVID-19 outbreak with relevant information for Duchenne and Becker muscular dystrophy.

2021

March 16

• A webinar report ‘Duchenne & Vaccines’ is now available in English. Next to this, a scheme is published sharing when and how to adjust a steroid regimen when receiving a COVID vaccination.
  • ONLY the 8-10 days on/off scheme can be adapted to the vaccination
  • DO NOT change daily or alternate day dosing
• Changes in your steroid regimen should always be discussed with the one prescribing it, which is often a clinician.

February 28

• During the WDO Member Meeting on February 28, the World Duchenne Organization invited Dr. Erik Niks to present a webinar about Duchenne Muscular Dystrophy in relation to the COVID-19 vaccines. Dr. Niks is a pediatric and adult neurologist in Leiden University medical Center (NL). He discusses questions often received from both families and clinicians, and proposes guidance on getting your vaccination when you’re on medications and steroids.

 

February 18

• The European Medicines Agency compiled its latest publications on COVID-19 vaccines
  • AstraZeneca European Public Assessment Report (EPAR)
  • EMA receives application for conditional marketing authorisation of COVID-19 Vaccine Janssen
  • EMA starts rolling review of CureVac’s COVID-19 vaccine (CVnCoV)
  • Clarification on Sputnik V vaccine in the EU approval process
  • EMA preparing guidance to tackle COVID-19 variants

January 25

• Many people have concerns about receiving the COVID-19 vaccine, and whether complications can arise for people who take immunosuppressants. In response, four neuromuscular experts have confirmed that the COVID-19 vaccines are safe, and are encouraging young people over 16 with DMD to take it as soon as possible. Please read the full statement here.

January 15

• The European Patients Forum created a document ‘Let’s talk about vaccination‘. This guide will be useful to anyone wishing to strengthen their knowledge and confidence in having meaningful conversations about vaccination.

January 12

• The current approved COVID-19 vaccines, just as any other mRNA vaccines will not impact gene therapy for Duchenne Muscular Dystrophy (DMD). Each vaccine targets a different virus and does not recognize the proteins from virus used for the gene therapy.

2020

December 23

• The World Muscle Society (WMS) has provided advice for people with neuromuscular disorders, and their healthcare providers since the start of the COVID-19 pandemic. This document available in English and in Spanish aims to answer questions regarding the newly developed vaccines against Coronavirus SARS-CoV2 asked by people with neuromuscular disorders.

July 2

• International regulators provide guiding principles for COVID-19 clinical trials. The EMA has endorsed a joint statement on prioritisation of COVID-19 clinical trials published by the International Coalition of Medicines Regulatory Authorities (ICMRA).

June 26

• How do you return (or not) to the Standards of Care for someone affected by Duchenne or Becker muscular dystrophy, now that most countries are opening up again? What preventive measures can we take when visiting a hospital, or our schools? Prof. Muntoni, Prof. Goemans, Dr. Wong and Dr. Cripe provide their expert opinion on care for DMD/BMD in times of COVID-19.

May 28

• The European Parliament Interest Group on Equitable Access to Healthcare and the Patient Access Partnership (PACT) released a joint statement on COVID-19. Full statement can be read here. The Joint Statement was signed by 58 MEPs and was sent to the Commissioner and to Stella Kyriakides.

May 9

• Parent Project Muscular Dystrophy published a consensus statement for the care of persons with Duchenne and Becker muscular dystrophy during the COVID-19 pandemic. Read the full publication here.

May 5

• The preliminary results of EURORDIS’ Rare Barometer survey shows 9 in 10 people living with a rare disease are experiencing interruption in care because of COVID-19.

April 21

• The World Health Organization shares multiple publications on mental health and psychological support during COVID-19. This includes materials specific to parenting, coping with stress, and how to give remote psychological support.

April 16

• The European Patients Forum shares an Open Memo to health industry representatives outlining the main challenges for patients with chronic diseases and our expectations regarding their on-going commitment and contribution COVID-19 times.

April 8

• EURORDIS has published today a new open letter to policy makers setting out the challenges people living with a rare disease are facing during the COVID-19 pandemic and specific recommendations on how policy makers can address challenges.
• The Fundamental Rights Agency (FRA) shares a report on ‘Coronavirus pandemic in the EU: fundamental rights implications’.

April 7

• Audentes shares a community letter expressing the impact of COVID-19 on the progress of preclinical work in Duchenne muscular dystrophy.

April 6

• Supply of medicines is a critical concern for medicine regulators. EU authorities agree new measures to support availability of medicines used in the COVID-19 pandemic.

April 4

• The fourth WDO Webinar on COVID-19 and DMD/BMD is now available. In this edition, clinical neuropsychologists Dr. Jos Hendriksen and Dr. Molly Colvin share their knowledge about stress, anxieties and worries, and what you can do to take care of yourself and your children.

April 2

• A powerful plea by Dr. Jon Hastie from DMD Pathfinders. He speaks up for vulnerable people who get denied critical care in times of COVID-19. “Why are we asking front-line staff to make heart-wrenching decisions on who to save?”

April 1

• The European Medicines Agency shares an update on treatment and vaccines on COVID-19, including a separate update on chloroquine an hydroxychloroquine.
• PPMD hosted an interactive webinar focusing on the adult Duchenne population and their unique risks for COVID-19, featuring representation from across their network of Certified Duchenne Care Centers to discuss adult neuromuscular, cardiac, and pulmonary concerns and answer questions.

March 31

• EURORDIS-Rare Diseases Europe is alarmed that people living with a rare disease are being discriminated against in the prioritisation of patients during the COVID-19 pandemic. They urge patient organisations to take action to protect these populations with proposals listed in this document.

March 30

• The World Muscle Society shares their position and advice on COVID-19 and people with neuromuscular disorders. These recommendations are designed primarily for patients, carers, general neurologists and non-specialist medical providers. They are also intended to inform neuromuscular specialists particularly regarding frequently asked questions and basic service requirements. In-depth reference links are provided.
• The Biostatistics Working Party from the EMA released for public consultation “Points to consider on implications of Coronavirus disease on methodological aspects of ongoing clinical trials”. Here, major points are raised for consideration to Sponsors whose ongoing clinical trials are or might be affected.
• SOLID BioSciences shares their community letter on the COVID-19 impact regarding IGNITE DMD.

March 28

• The translation of the COVID-19 diary of DMD patient Bert Gooris is now available in English. The original story can be found on the website of Duchenne Parent Project Belgium.
• The third WDO Webinar on COVID-19 and DMD/BMD is now available on YouTube. Patient organisations explain the current situation in their countries and challenges due to the coronavirus outbreak. Prof. Dr. Jan Verschuuren, LUMC the Netherlands, explains how families, clinicians and hospitals can prepare for potential DMD patients with COVID-19 infection.

March 27

• Today the news reached us that a young Duchenne adult from Belgium has been tested positive with COVID-19. Now that the 29 year old Bert from Leuven, Belgium is back home from the hospital, he shares what he calls his ‘Corona Adventure’.
• The European Medicines Agency advises continued use of medicines for hypertension such as ACE inhibitors or ARBs, heart or kidney disease during COVID-19 pandemic
• Catabasis shares their newsletter to reach out and share information to questions about edasalonexent and COVID-19.
• PTC Therapeutics provides an update regarding availability of Translarna. If patients prescribed Translarna are facing a challenge with maintaining a continuous supply, they should inform their health care professional or patient group and a solution will be found.

March 26

• The European Reference Network for neuromuscular diseases is trying to understand track the effect COVID-19 is having on the neuromuscular community. To do this they have developed two surveys, one patient survey and a hospital survey.
• Santhera shares their community letter to DMD patients participating in the SIDEROS and SIDEROS-Extension studies.

March 25

• European Medicines Agency: Global regulators have published a report today presenting the outcomes of a workshop on COVID-19 vaccine development that was convened under the umbrella of the International Coalition of Medicines Regulatory Authorities (ICMRA).

March 24

• The FDA and EMA urges families to not buy medicines from unauthorised websites and other vendors aiming to exploit fears and concerns during the COVID-19 outbreak. Here is how to protect yourself from fake medicine.

March 23

• The full report of the second webinar is online (English). Organisations are encouraged to share the report to reach as many families and clinicians as possible.

March 22

• The Association of British Neurologists provide guidance on COVID-19 for people with neurological conditions, their doctors and carers. Please note this is not specific for Duchenne or Becker muscular dystrophy.

March 21

• WDO hosted her second webinar addressing frequently asked questions about COVID-19 in relation to Duchenne and Becker muscular dystrophy. This time, Dr. Jarod Wong and Prof. Dr. Annamaria de Luca provide their opinion on the use of steroids, and possible treatments for the Coronavirus for people affected by DMD/BMD.

March 20

• The European Commission, the European Medicines Agency (EMA) and national Head of Medicines Agencies (HMA) have published new recommendations for sponsors on how to manage the conduct of clinical trials in the context of the coronavirus disease (COVID-19) pandemic.

March 19

• The New York Times shares a infographic (also available in Spanish) about how the COVID-19 virus works.
• Sarepta shares their community update on the COVID-19 outbreak

March 18

• The U.S. Food and Drug Administration today issued a guidance for industry, investigators and institutional review boards conducting clinical trials during the coronavirus (COVID-19) pandemic.
• TAMDMD shares in their newsletter they recommended to reduce travelling and trial center visits.

March 17

• Clinical trials might be affected due to the Coronavirus outbreak. At the moment we don’t have detailed information. Which measurements will be taken, can change per trial.

March 16

• The report of the COVID-19 webinar can be found here, together with a summary of ’15 things we know so far‘. Patient organisations are encouraged to share the materials with their families and clinicians.

March 15

• Various patient organisations are hosting webinars to address concerns about the COVID-19 outbreak. Please visit your local patient organisation’s media channels or contact them directly for more information.

March 14

• WDO hosted a webinar for her members on COVID-19 and Duchenne/Becker muscular dystrophy. See the full webinar below.

March 13

• The ESC Council shared a Position Statement on Hypertension on ACE-Inhibitors and Angiotensin Receptor Blockers. The Council on Hypertension strongly recommend that physicians and patients should continue treatment with their usual anti-hypertensive therapy because there is no clinical or scientific evidence to suggest that treatment with ACEi or ARBs should be discontinued because of the Covid-19 infection.

March 11

• The World Health Organization officially marks the novel coronavirus COVID-19 to be a pandemic.
• Stanford University School of Medicine shares a webinar ‘Coronaviruses for non-virologists‘ explaining more about the origin and possible spread of the novel coronavirus.