CureDuchenne Link®: A Resource for Research

Description

CureDuchenne link is a data hub comprised of integrated biospecimens, clinical data, and self- and/or caregiver-reported information from participants. Anyone over 4 weeks old who has been diagnosed with DMD or BMD or who is a carrier of DMD or BMD can join. Parents or legal guardians can sign up their child(ren).

Conditions

Duchenne Muscular Dystrophy, Becker Muscular Dystrophy

Study Overview

Study Details

Study overview

CureDuchenne link is a data hub comprised of integrated biospecimens, clinical data, and self- and/or caregiver-reported information from participants. Anyone over 4 weeks old who has been diagnosed with DMD or BMD or who is a carrier of DMD or BMD can join. Parents or legal guardians can sign up their child(ren).

CureDuchenne Link®: A Resource to Support Research Studies in Duchenne and Becker Muscular Dystrophy (DMD/BMD)

CureDuchenne Link®: A Resource for Research

Condition
Duchenne Muscular Dystrophy
Intervention / Treatment

-

Contacts and Locations

Little Rock

Arkansas Children's Hospital, Little Rock, Arkansas, United States, 72202

Newport Beach

CureDuchenne, Newport Beach, California, United States, 92660

Orange

Children's Hospital of Orange County, Orange, California, United States, 92868

Atlanta

Rare Disease Research, Atlanta, Georgia, United States, 30329

Iowa City

University of Iowa, Iowa City, Iowa, United States, 52242

Fairway

Kansas University Clinical Research Center, Fairway, Kansas, United States, 66205

Grand Rapids

Corewell Health, Grand Rapids, Michigan, United States, 49503

Hillsborough

Rare Disease Research Center, Hillsborough, North Carolina, United States, 27278

Hershey

Penn State Health, Hershey, Pennsylvania, United States, 17033

Denton

Neurology Rare Disease Center, Denton, Texas, United States, 76208

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • 1. Any of the following are true:
  • 1. Currently has a confirmed diagnosis of DMD/BMD based on genetic testing, muscle biopsy, or clinical diagnosis.
  • 2. Currently has a confirmed diagnosis of carrier status for DMD/BMD based on genetic testing.
  • 2. Parent/guardian (for minor participants) or participant gives informed consent and/or assent as required by local regulations.
  • 3. Is age 4 weeks or older at the time of consent.
  • 1. Is a foster child or ward of the state.
  • 2. Is a prisoner.

Ages Eligible for Study

4 Weeks to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

CureDuchenne,

Debra Miller, PRINCIPAL_INVESTIGATOR, CureDuchenne

Study Record Dates

2031-07-09