A daily updated news feed on the COVID-19 outbreak with relevant information for Duchenne and Becker muscular dystrophy.
- 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.
- 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.
- 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.
- 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.
- 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).
- 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.
- 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.
- 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.
- 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.
- 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.
- 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
- 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.
- 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.
- 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.
- 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.
- WDO hosted a webinar for her members on COVID-19 and Duchenne/Becker muscular dystrophy. See the full webinar below.
- 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.