Accelerating Research

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

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

Clinical data is physical examination findings and test results from medical or health records

Genomic Data

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:


CureDuchenne Helix

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.


Thank You

To Our Partners

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You can advance the care, treatment and cure for Duchenne muscular dystrophy. Contributions in any amount can truly make a difference and can be credited to a fundraiser or event from the list below.

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