News

Prof. Annemieke Aartsma-Rus is taking on a challenge by reading and commenting on a paper a day. See below the overview of April 2022.

The post Monthly #apaperaday wrap-up: April 2022 appeared first on World Duchenne.

The clinical hold on Pfizer CIFFREO Phase 3 ambulatory trial is lifted. They are now working to activate U.S. trial sites.

The post Pfizer CIFFREO Phase 3 ambulatory trial re-started appeared first on World Duchenne.

Relief Ukraine connects patients with chronic diseases with the organizations responsible for distributing aid and support.

The post Relief Ukraine: Tool to trace Ukrainian patients’ needs of medicines appeared first on World Duchenne.

Quantitative magnetic resonance imaging measures as biomarkers of disease progression in boys with Duchenne muscular dystrophy: a phase 2 trial of domagrozumab.

The post #apaperaday: Quantitative magnetic resonance imaging measures as biomarkers of disease progression in boys with Duchenne muscular dystrophy appeared first on World Duchenne.

While assuring medical assistance for people living with Duchenne Muscular Dystrophy (DMD) is extremely important, all aspects of everyday life of those living with the condition and their families are heavily impacted. Access to a full life, education, psychological support, work and activities is an important issue that people living with DMD and their families … Continue reading The daily life of people living with Duchenne Muscular Dystrophy and their families

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The Duchenne Data Foundation and the World Duchenne Organization are staying close to the families affected by Duchenne and Becker MD in Ukraine due to the conflict. We urge Ukrainian families to contact us and send any information, updates and requests to [email protected] Follow the page below to stay informed on the actions taken to support … Continue reading Duchenne Emergency Program activated for Ukrainian Duchenne and Becker MD families

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Duchenne Map is an online platform built to centralize important information and connect the different stakeholders of the DMD/BMD community. It was created to connect people living with Duchenne or Becker Muscular Dystrophy with their local patient organizations, healthcare providers, care centers, researchers, research institutions and companies. Clinical Trials Last year, the clinical trials finder filter function … Continue reading Duchenne Map presents personalized clinical trial finder

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4. New Board of Directors member
18 January 2022, 1:22 pm

The Duchenne Data Foundation welcomes Arjen Bergsma as Board Member Arjen Bergsma is currently working as programme officer of medical technology at the Dutch Research Council. He is specialized in Applied and Engineering Sciences (NWO-TTW). Arjen reiceved his MSc degree in Biomedical Engineering at the University of Twente in 2009. In 2016, he obtained a … Continue reading New Board of Directors member

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Duchenne Parent Project in the Netherlands announced that their patient-led online registry (The Duchenne Data Platform) has successfully deployed an innovative and sustainable FAIR solution, achieving a FAIR status. Findability – machines can find DDP Accessibility – machines can read that access is open for metadata  Interoperability – a FAIR transformation solution has been implemented … Continue reading Duchenne Data Platform, the first patient-led registry to achieve a FAIR status

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Last week, the 5th edition of Duchenne Patient Academy has taken place virtually. More than 75 Duchenne and Becker MD patient advocates from over 40 countries actively participated in the 5-day training. The goal of this Academy is to educate and strengthen the global Duchenne and Becker Muscular Dystrophy community. Duchenne Patient Academy is a … Continue reading DMD community celebrates successful Duchenne Patient Academy 2021

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7. Duchenne Patient Academy 2021
18 October 2021, 9:57 am

The Duchenne Data Foundation, in collaboration with the World Duchenne Organization, is launching the 4th edition of the Duchenne Patient Academy (DPA). In this intensive training session, patient advocates receive training and updates to build a strong base for current and future global advocacy. Goal Through connecting leading experts in their fields, Duchenne Patient Academy … Continue reading Duchenne Patient Academy 2021

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BIND researchers provide a model for studying learning and behaviour challenges in Duchenne MD The presence and severity of learning weaknesses and behavioural disturbances is highly variable among patients affected by Duchenne muscular dystrophy (DMD), which is believed to depend on the position of the mutation within the dystrophin (DMD) gene. The exon-52-deleted mdx52 mouse is a … Continue reading First research paper – BIND Project

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The Duchenne CAB held its 7th meeting between April and July 2021. Due to the COVID- 19 pandemic, the meetings were again held virtually via video conference. Twelve Duchenne CAB members from twelve countries met with five companies in six separate meetings during this period, in addition to executing a number of internal preparation and … Continue reading Report – 7th Duchenne CAB meeting

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Last March, the World Duchenne Organization in collaboration with the Duchenne Data Foundation organized the second Meeting on FAIR Data Sharing for Duchenne. During this meeting, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare. The report is available now. Click here to read the full report (link) Optimal … Continue reading Patient Organizations and FAIR Data Efforts to facilitate Research and Health Care

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