We are thrilled to announce that the Duchenne Map ECRD abstract has been published in the prestigious Orphanet Journal of Rare Diseases. Duchenne Map is a groundbreaking initiative addressing the challenges faced by the dystrophinopathy community.
ECRD Abstract
The publication of the Duchenne Map abstract in the Orphanet Journal of Rare Diseases after European Conference on Rare Diseases (ECRD) 2022 signifies the recognition and support of this important initiative by the rare disease community.
The problem
Rare disease communities, including those affected by dystrophinopathies, often struggle with fragmentation, duplicated efforts, and a lack of reliable information. These obstacles hinder access to treatment, recruitment for clinical trials, and the development of new therapies. Ultimately, this is affecting the quality of life for patients and their families.
To overcome these challenges, the Duchenne Data Foundation has developed the Duchenne Map—an online platform that connects patients, researchers, healthcare providers, patient organizations, research institutions, and companies. Its goal is to provide accessible and reliable information to the Duchenne community globally.
Users can register on the Duchenne Map and complete their profiles, undergoing a rigorous verification process to ensure authenticity. Once registered and validated, users gain access to a wealth of information. This includes details on patient organizations, healthcare providers, care centers, researchers, research projects, and clinical trials.
Duchenne Map
Currently, the Duchenne Map features patient organizations, companies, and information on clinical trials. Registered users can take advantage of a personalized clinical trial filter function, allowing them to search for trials based on age, use of corticosteroids, and ambulation status. Additional filters, such as mutation type and specific care services, are currently being implemented.
The Duchenne Map is supported by a FAIR-by-design Repository. This ensures the security and accessibility of data. The Duchenne Data Repository hosts various dystrophinopathy data, from pre-clinical research to clinical trial data and patient-generated health data. The platform is compliant with all GDPR, security, data protection, and privacy standards.
Going forward, we will continuously improve the Duchenne Map based on user feedback. Registration campaigns are ongoing to raise awareness about its functionality. We believe the Duchenne Map has the potential to make a significant impact on the lives of dystrophinopathy families.
We extend our gratitude to the PTC Therapeutics Strive Awards program for their support of the Duchenne Map.
To learn more about Duchenne Map, please visit https://www.duchennemap.org/
About ECRD
The European Conference on Rare Diseases (ECRD) is a prominent gathering that brings together experts, healthcare professionals, researchers, patient advocates, and industry representatives to address the challenges associated with rare diseases. It serves as a platform for sharing knowledge, fostering collaborations, and driving advancements in rare disease research and patient care.