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.

Learn More

 

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

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

Clinical data is information collected from your
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.

Learn More

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.

Learn More

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.

Learn More

CureDuchenne Link Research Sites

Neurology & Neuromuscular Care Center Denton, TX
Diana Castro, MD

2817 S Mayhill Rd #115
Denton, TX 76208
(972) 982-7411
Website
Arkansas Children’s Hospital Little Rock, AR
Aravindhan Veerapandiyan, MD

1 Children’s Way slot 846
Little Rock, AR 72202
501-236-4858
Website
University of Iowa Iowa City, IA
Katherine Mathews, MD

200 Hawkins Drive, BT 1300-43
Iowa City, Iowa 52242
(319) 356-1851
Website
Penn State Health Milton S. Hershey Medical Center Hershey, PA
Ashutosh Kumar, MD

500 University Drive
Hershey, PA 17033
717-531-5656
Email
Corewell Health Grand Rapids, MI
Jena Kruger, MD

35 Michigan St NE, Suite 3003
Grand Rapids, MI 49503
616.267.2500
Website
University of Kansas Medical Center Fairway, KS
Jeffrey Statland, MD

4330 Shawnee Mission Pkwy. Suite 3340
Fairway, KS 66205
913-588-2226
Website
Rare Disease Research Atlanta, GA
Han Phan, MD

1730 NE Expy NE
Atlanta, GA 30329
678-883-6897
Website
Rare Disease Research Hillsborough, NC
Edward Smith, MD

405 Meadowlands Dr
Hillsborough, NC 27278
984-283-3524
Website
UC San Diego Health San Diego, CA
Chamindra Laverty, MD

4510 Executive Drive
San Diego, CA 92121
858-657-7000
Website
Children’s Hospital of Orange County Orange, CA
Amanda Fernandez, MD

1201 W. La Veta Ave.
Orange, CA 92868
714-509-7601
Website

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.

Learn More
 
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.

If you have any questions, please reach out to our Link team by at
support@cureduchennelink.org or call us at 888-CD LINK5 (888-235-4655)

 

Share This Page

Make an Impact

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.

Donate