Linking the Community to a Cure
To Develop Treatments
CureDuchenne Link is a centralized data hub that connects information provided by the Duchenne and Becker community directly to researchers.
More than just a registry or a biobank, our platform facilitates data sharing, critical to advancing our understanding of these diseases and accelerating research towards a cure.
An Innovative Approach
To Integrated Patient Data
Multiple sources of Duchenne, Becker and carrier data in one accessible platform reduces the search for answers.
Biosamples, biospecimens or specimens are tissue, blood, urine, saliva or other biological material from the body which is stored and used for research
Patient Reported Data
Patient reported data is captured through surveys and questions asked in the application completed by participants or their caregivers
Clinical data is physical examination findings and test results from medical or health records
Genomic data from DNA, exome analysis, and/or whole genome sequencing is collected in raw form and stored in our database for researchers to analyze
Every Mutation Matters
To Effect Real Change
Gathering quality data and biosamples from as large and diverse a population as possible provides the insight needed to support critical Duchenne and Becker muscular dystrophy research.
Bold Solutions To Accelerate Research
Community-centric approach to participation
CureDuchenne Link uses custom technology and world-class partnerships to deliver a seamless, patient-centric experience. Building on our nation-wide community engagement efforts, CureDuchenne Link allows participation from anywhere in the US, no matter where participants receive their care. Participants can choose from a menu of opportunities, all of which can be done in-home or near home.
Data and samples are widely accessible to qualified researchers
Breaking the mold of siloed projects, CureDuchenne Link allows qualified researchers access to coded data and biosamples in one all-encompassing platform. Holistic data is curated using industry-standard terminology, allowing harmonization with other research data sets.
Data integrated with patient experiences to treat the whole disease
CureDuchenne Link is a safe and secure data resource that links clinical data, genomic data, biosamples, and patient reported outcomes in one platform. By regularly updating and integrating this data, CureDuchenne Link provides a 360- degree view of life with Duchenne and Becker muscular dystrophy.
Safe & Secure
For Peace of Mind
Researchers can only access coded data which assigns a unique participant ID number and removes personally identifiable information (PII), such as your name and date of birth. This data is encrypted and stored in a password-protected, limited-access, HIPAA-compliant cloud platform.
Are You a Researcher
Looking For More Information?
Submit the form below to request more information about CureDuchenne Link:
We Are Committed
To Finding a Cure
From the beginning, CureDuchenne has been building a stronger community in order to drive therapeutic development.
If you would like to support our mission and help us build groundbreaking technologies to advance therapeutic research, please consider donating today.