Resources - iNMD

What We’ve Learned

ImagingNMD is closely working with pharmaceutical companies to facilitate clinical trials of new drugs for various muscular dystrophies.

Recent Articles

What Exercises Are Appropriate with Becker?

Exercise is a great way to improve your physical and mental health. However, knowing what exercises to do with a Becker muscular dystrophy diagnosis can be a challenge. We’ll cover the most common questions asked about exercising with BMD and some tips on how to get started.

The Diagnosis and Management of Duchenne Muscular Dystrophy: A Guide For Families

In 2018, the Muscular Dystrophy Association, Parent Project Muscular Dystrophy, TREAT-NMD, and the World Duchenne Organisation collaborated and produced a comprehensive Duchenne Guide for Families. Download the guide in English below or in a number of different formats and languages.

Cardiac Care for Men with BMD

This article describes the role of cardiac care in managing Becker muscular dystrophy—detailing the signs, preventative cardiac imaging, medication considerations, and more.

Examination of effects of corticosteroids on skeletal muscles of boys with DMD using MRI and MRS

This study demonstrates the sensitivity of MRI and magnetic resonance spectroscopy (MRS) as a biomarker to detect the effects of corticosteroids on leg muscles. This underlines the potential of MRI/MRS as a biomarker in clinical trials assessing therapeutic interventions for Duchenne muscular dystrophy.

MR biomarkers predict clinical function in Duchenne muscular dystrophy

This study demonstrates a strong relationship between lower extremity MRI and functional measures over a period of 48 months. In addition, MR biomarkers of proximal muscles predicted future ambulatory and clinical milestone status

Magnetic Resonance Imaging Studies in Duchenne Muscular Dystrophy: Linking Findings to the Physical Therapy Clinic. Phys Ther.

This article describes how MRI has impacted our understanding of Duchenne muscular dystrophy and discusses implications for physical therapy care for individuals with this rare disease.

Videos & Webinars

Development of Imaging Biomarkers for Becker Muscular Dystrophy

Pat Chat with Krista Vandenborne

Play Video

Additional Resources

Parent Project Muscular Dystrophy(PPMD)

provides a registry for DMD and BMD, funds research, provides support from a network of experts, educational programing, helps ensure excellence in care in centers around the country and more.

Decode Duchenne Program– free genetictesting and counseling

Diagnostic testing
Carrier testing

www.parentprojectMD.org

TREAT-NMD Neuromuscular Network

“Advancing diagnosis, care and treatment for those living with neuromuscular diseases”

Provides resources for patients, clinicians, and industry.

www.treat-nmd.org

Child Muscle Weakness

“National task force for early identification of childhood neuromuscular disorders.”

NORD-National Organization for Rare Disorders

Provides:

Rare disease database
Patient caregiver & resource center
Patient assistance programs

www.rarediseases.org

Myology Institute University of Florida

Advances in skeletal muscle biology in health and disease.
Interdisciplinary researchers, industry, and other institutions work together in collaborative ways to enhance the understanding and treatment of neuromuscular diseases.

www.myology.institute.ufl.edu

University of Florida Health Center for Neuromuscular and Rare Diseases

The center partners with MDA and coordinates care from a collaborative team of specialists available to the patient.

https://ufhealth.org/uf-health-center-pediatric-neuromuscular-and-rare-diseases

Care Guidelines- Duchenne muscular dystrophy

3 articles published in 2018 outline the overall health care for an individual with DMD including early diagnosis, systems review, primary care, emergency management, psychosocial care and transitions of care across the life span. Click here to download the PDF.