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Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy Registry

StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Amendment history

  1. Notable

    Primary and study completion dates: Jun 2025 to Jun 2028

    Study Statusv32

  2. Minor

    Eligibility criteria shortened, about 11 words

    Show what changed: Eligibility criteria
    [...] amily member of someone diagnosed with one of these diseases Exclusion Criteria: No family history of DM, FSHD, or related diseases

    Study Status, Sponsor/Collaborators, Oversight, Eligibility, Contacts/Locationsv31

  3. Notable

    Primary and study completion dates: Jun 2024 to Jun 2025

    Study Statusv30

  4. Notable

    Primary and study completion dates: Jun 2023 to Jun 2024

    Study Statusv29

  5. Minor

    4 amendments

    4 re-verifications since 2019-11-05, no change to tracked fields

    v25-v28

Show 23 earlier versions

  1. Notable

    Primary and study completion dates: Jun 2018 to Jun 2023

    Study Statusv24

  2. Minor

    4 amendments

    4 re-verifications since 2015-10-28, no change to tracked fields

    v20-v23

  3. Minor

    Enrollment target: 2300 to 3000

    Study description expanded, about 2 words

    Show what changed: Study description
    [...] s keep track of how your symptoms change over time. Receive a newsletter once a yearupdates about the progress of the Registry, research highlights, and other news related to muscular dystrophy through newsletters, an email listserv, and Facebook. Receive a letterletters from the Registry when researchers are looking for patients [...] include filling out questionnaires, exploring new treatments, and other types of research. There is no obligation to part [...]

    Study Status, Study Description, Study Design, Referencesv19

  4. Minor

    Study Status

    Re-verified, no change to tracked fields

    v18

  5. Minor

    Site contact updated

    Study Status, Contacts/Locationsv17

  6. Notable

    Primary and study completion dates: Jun 2013 to Jun 2018

    Study Statusv16

  7. Minor

    Primary completion date: Jun 2013

    Eligibility criteria expanded, about 11 words

    Show what changed: Eligibility criteria
    [...] amily member of someone diagnosed with one of these diseases Exclusion Criteria: No family history of DM, FSHD, or related diseases

    Study Status, Conditions, Outcome Measures, Eligibilityv15

  8. Minor

    Study Status, Sponsor/Collaborators

    Re-verified, no change to tracked fields

    v14

  9. Notable

    Lead sponsor: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to University of Rochester

    Completion date: Sep 2010 to Jun 2013

    Study Identification, Study Status, Sponsor/Collaboratorsv13

  10. Minor

    2 amendments

    2 re-verifications since 2008-09-03, no change to tracked fields

    v11-v12

  11. Minor

    Site contact updated

    Study Status, Contacts/Locationsv10

  12. Minor

    Study description shortened, about 1 word

    Show what changed: Study description
    [...] at are interested in joining the Registry can email or call us to request an application or download the forms from ourthe website (www.dystrophyregistry.org). The Application packet contains: A Patient Information Form, thatwhich asks about your muscle strength, general health, and how your disease affects your daily life A Medical Records Release Form, towhich allowallows 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 [...] y or filling out the annual updates are completely up to you!.

    Study Status, Sponsor/Collaborators, Study Descriptionv9

  13. Minor

    Completion date: Sep 2010

    Start date: Sep 2000; Eligibility criteria expanded, about 2 words

    Show what changed: Eligibility criteria
    Inclusion Criteria: Diagnosed with DM, FSHD, or related diseases or are an unaff [...]

    Study Status, Oversight, Study Design, Eligibilityv8

  14. Minor

    Study description expanded, about 93 words

    Show what changed: Study description
    The National Registry of DM and FSHD Patients and Family Members was starteddeveloped to helpcreate peoplea withlink DMbetween patients and FSHD participatescientists in research on their diseases,order to help scientists accomplish research on DM or FSHD, and to encourage morepromote research on these diseasesrare illnesses. PeopleThe wishingRegistry is sponsored by the National Institutes of Health. Patients that are interested in joining the Registry can email or call us to join this registry complete a consent form, signrequest an Authorizationapplication foror Releasedownload ofthe Medica [...] [...]

    Study Status, Study Descriptionv7

  15. Notable

    Enrollment target: 9622 to 2300

    Study Status, Study Designv6

  16. Minor

    Site contact updated

    Study Status, Eligibility, Contacts/Locationsv5

  17. Minor

    Study Status

    Re-verified, no change to tracked fields

    v4

  18. Minor

    Site contact updated

    Study Status, Study Description, Contacts/Locationsv3

  19. Minor

    Study Status

    Re-verified, no change to tracked fields

    v2

  1. Minor

    Study First Submitted

  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
Myotonic dystrophy (DM) and facioscapulohumeral muscular dystrophy (FSHD) are inherited disorders characterized by progressive muscle weakness and loss of muscle tissue. The purpose of this registry is to connect people with DM or FSHD with researchers studying these diseases. The registry will offer individuals with DM and FSHD an opportunity to participate in research that focuses of their diseases. The registry will also help scientists to accomplish research on DM and FSHD and to distribute their findings to patients and care providers.
Trial Details
NCT Number NCT00082108
Lead Sponsor University of Rochester
Collaborators: National Institute of Neurological Disorders and Stroke (NINDS)
Conditions Myotonic Dystrophy, Facioscapulohumeral Muscular Dystrophy, Muscular Dystrophy, Myotonic Dystrophy Type 1, Myotonic Dystrophy Type 2, Congenital Myotonic Dystrophy, PROMM (Proximal Myotonic Myopathy), Steinert's Disease +1 more
Enrollment 3,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov