Recruiting

National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members

0 criteria met from your profileSee at a glance how your profile meets each eligibility criteria.
What is being collected

Data Collection

Collected from today forward - Prospective
Who is being recruted

Muscular Diseases+10

+ Muscular Dystrophies

+ Musculoskeletal Diseases

See all eligibility criteria
How is the trial designed

Other

Utilizing specific methods not covered by standard models in order to address unique research questions.
Observational
Study Start: September 2000
See protocol details

Summary

Principal SponsorUniversity of Rochester
Study ContactRegistry Coordinator
Last updated: January 18, 2026
Sourced from a government-validated database.Claim as a partner

Study start date: September 1, 2000

Actual date on which the first participant was enrolled.

The National Registry of DM and FSHD Patients and Family Members was developed to create a link between patients and scientists in order to promote research on these rare illnesses. The Registry is sponsored by the National Institutes of Health. Patients that are interested in joining the Registry can email or call to request an application or download the forms from the website (www.dystrophyregistry.org). The Application packet contains: * A Patient Information Form, which asks about your muscle strength, general health, and how your disease affects your daily life * A Medical Records Release Form, which allows us to contact your doctor and obtain records about your diagnosis * An informed Consent Form, which describes the study's purpose and what you can expect while you are involved with the project. After you are enrolled in the Registry, there are several ways to participate in research. The activities include: * Complete an annual update form to help us keep track of how your symptoms change over time. * Receive updates about the progress of the Registry, research highlights, and other news related to muscular dystrophy through newsletters, an email listserv, and Facebook. * Receive letters from the Registry when researchers are looking for patients to take part in studies. These projects may include filling out questionnaires, exploring new treatments, and other types of research. There is no obligation to participate in these activities. Taking part in any study or filling out the annual updates are completely up to you.

Official TitleNational Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Patients and Family Members 
NCT00082108
Principal SponsorUniversity of Rochester
Study ContactRegistry Coordinator
Last updated: January 18, 2026
Sourced from a government-validated database.Claim as a partner

Protocol

This section provides details of the study plan, including how the study is designed and what the study is measuring.
Design Details

3000 patients to be enrolled

Total number of participants that the clinical trial aims to recruit.

Other

Some studies use unique or mixed approaches that don't fit standard categories. These may include innovative observational methods or studies tailored to specific research questions.

Eligibility

Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.
Conditions
Criteria

Any sex

Biological sex of participants that are eligible to enroll.

Healthy volunteers allowed

If individuals who are healthy and do not have the condition being studied can participate.

Conditions

Pathology

Muscular DiseasesMuscular DystrophiesMusculoskeletal DiseasesMyotonic DystrophyCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesNervous System DiseasesNeuromuscular DiseasesNeurodegenerative DiseasesHeredodegenerative Disorders, Nervous SystemMuscular Dystrophy, FacioscapulohumeralMuscular Disorders, AtrophicMyotonic DisordersGenetic Diseases, Inborn

Criteria

Inclusion Criteria: * Diagnosed with DM, FSHD, or related diseases or are an unaffected family member of someone diagnosed with one of these diseases

Study Plan

Find out more about all the medication administered in this study, their detailed description and what they involve.
Study Objectives

Study Objectives

Primary Objectives

Study Centers

These are the hospitals, clinics, or research facilities where the trial is being conducted. You can find the location closest to you and its status.

This study has 1 location

Recruiting

University of Rochester Medical Center, Department of Neurology

Rochester, United StatesSee the location
Recruiting
One Study Center