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.
Bio-samples encompass biological materials such as blood, urine, and other bodily components. Once collected, these materials are securely stored and utilized for research purposes.
Participant Reported Data
Patient reported data is captured through surveys and questions asked in the application completed by participants or their caregivers.
Clinical data is information collected from your
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, participant-centric experience. Building on our nation-wide community engagement efforts, CureDuchenne Link allows participation from anywhere in the US and US Territories, no matter where participants receive their care. Participants can voluntarily consent to several bio-sample donation options, all of which can be through a Link affiliated research site near you, in-home, or at a nearby Quest center.See our site map below.
Data and samples are widely accessible to qualified researchers
Breaking the mold of siloed projects, CureDuchenne Link allows qualified researchers access to de-identified data and biosamples in one all-encompassing platform. Holistic data is curated using industry-standard terminology, allowing harmonization with other research data sets.
Clinical data integrated with participant experiences to treat the whole disease
CureDuchenne Link integrates these four data collection methods to provide researchers focused on developing therapies and finding a cure for Duchenne and Becker muscular dystrophy with a comprehensive and holistic perspective on the conditions.
CureDuchenne Link Research Sites
Diana Castro, MD
2817 S Mayhill Rd #115
Denton, TX 76208
Aravindhan Veerapandiyan, MD
1 Children’s Way slot 846
Little Rock, AR 72202
Katherine Mathews, MD
200 Hawkins Drive, BT 1300-43
Iowa City, Iowa 52242
Ashutosh Kumar, MD
500 University Drive
Hershey, PA 17033
Jena Kruger, MD
35 Michigan St NE, Suite 3003
Grand Rapids, MI 49503
Jeffrey Statland, MD
4330 Shawnee Mission Pkwy. Suite 3340
Fairway, KS 66205
Han Phan, MD
1730 NE Expy NE
Atlanta, GA 30329
Edward Smith, MD
405 Meadowlands Dr
Hillsborough, NC 27278
Chamindra Laverty, MD
4510 Executive Drive
San Diego, CA 92121
Safe & Secure
For Peace of Mind
Researchers can only access coded data that 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.
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.
If you have any questions, please reach out to our Link team by at
firstname.lastname@example.org or call us at 888-CD LINK5 (888-235-4655)