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Observational Prolonged Trial in Myotonic Dystrophy Type 1

NCT02118779, Not applicable, Completed, Radboud University Medical Center

Trial 10

As registered on ClinicalTrials.gov, in the graph's capture of the registry.

FieldValueSource
TitleObservational Prolonged Trial in Myotonic Dystrophy Type 1ClinicalTrials.gov
NCT numberNCT02118779ClinicalTrials.gov
StatusCompletedClinicalTrials.gov
PhasesNot applicableClinicalTrials.gov
Enrollment255 participants, actualClinicalTrials.gov
Lead sponsorRadboud University Medical CenterClinicalTrials.gov
ConditionsMyotonic Dystrophy Type 1ClinicalTrials.gov
InterventionsBehavioural change interventionClinicalTrials.gov
First posted2014-04-21ClinicalTrials.gov
Last updated2017-07-18ClinicalTrials.gov

Registered outcomes 11

Each outcome the trial registered, primary first, in ClinicalTrials.gov's words.

ListOutcomeTime frameDescriptionSource
PrimaryDM1-ActivBaseline and 10 monthsThe primary outcome measure will be the change in DM1-Activ score. DM1-Activ is a specific outcome measure of activity and participation for patients with DM1.ClinicalTrials.gov
SecondarySix Minute Walk TestBaseline and 10 monthsSix minute walk test with BORG scale assessmentClinicalTrials.gov
SecondaryMyotonic Dystrophy Health Index (MDHI)Baseline and 10 monthsClinicalTrials.gov
SecondaryPhysical activity measured with actometerBaseline and 10 monthsClinicalTrials.gov
SecondaryFatigue and Daytime Sleepiness Scale (FDSS)Baseline and 10 monthsClinicalTrials.gov
SecondaryChecklist Individual Strength (CIS)Baseline and 10 monthsClinicalTrials.gov
SecondaryIndividualised Neuromuscular Quality of Life Questionnaire (InQoL)Baseline and 10 monthsClinicalTrials.gov
SecondaryBeck depression Inventory for Primary CareBaseline and 10 monthsClinicalTrials.gov
SecondaryApathy Evaluation Scale (AES)Baseline and 10 monthsClinicalTrials.gov
SecondaryStroop TestBaseline and 10 monthsClinicalTrials.gov
OtherExplanatory and/or Predictive outcomesBaseline, 10 and 16 monthsBiomarkers (urine and blood)ClinicalTrials.gov

Outcomes 0

Each outcome the trial posted results for, in ClinicalTrials.gov's words.

TypeOutcomeTime framePopulationUnitsMeasured asSource

Results by group 0

Each measurement the trial posted, group by group, in the words and numbers it posted.

OutcomeGroupCategoryValueSpreadUnitsSource

Participant flow 0

How many started, completed or left each group, period by period.

PeriodMilestoneGroupParticipantsUnits countedSource

Adverse events 0

Each adverse event the trial posted, group by group: the participants affected out of those at risk.

TypeEventOrgan systemGroupAffectedAt riskEventsSource

Adverse event totals 0

The totals the trial posted for each group.

TotalGroupAffectedAt riskSource

Papers 4

The papers the trial lists on ClinicalTrials.gov.

PMIDListed asSource
26002596BACKGROUNDPubMed
29934199DERIVEDPubMed
31118244DERIVEDPubMed
33884298DERIVEDPubMed

Grants 0

The grants NIH RePORTER links to the trial, newest funded first: NIH's, and some of AHRQ's, CDC's, FDA's and VA's. Each shows its title, principal investigators, organization and funder in its newest year.

ProjectTitlePrincipal investigatorsOrganizationFunderFiscal yearsSource

Trial comparisons 0

Comparisons of the trial's two groups, calculated by ConductScience from the counts it posted.

ComparisonSource

Tests 1

The ConductCognition tests this trial's registered outcomes name, as ScienceGraph matched them in trial-tests-2026-11-12-0.2.1.

TestNamed asSource
Stroop Color-Word TestSecondary outcomeConductCognition

Source 5

FieldValueSource
Releasetrials-2026-11-12-0.4.0ClinicalTrials.gov
Release manifest SHA-2560f4a8d8c48aee2a7573ae0fa94ecbeab70c1adbe449bbc95c424bc7d3e97b9d4ClinicalTrials.gov
Registry capture2026-11-12ClinicalTrials.gov
Results copy, AACT2026-03-23ClinicalTrials.gov
NIH clinical studies file2026-11-13ClinicalTrials.gov

The same record as JSON

Release trials-2026-11-12-0.4.0

ClinicalTrials.gov's posted results, through CTTI's AACT: ClinicalTrials.gov data via Aggregate Analysis of ClinicalTrials.gov (AACT), CTTI. CTTI makes its materials freely available and requests acknowledgement. https://aact.ctti-clinicaltrials.org/documentation/299 ClinicalTrials.gov's data carry an international copyright outside the United States: https://clinicaltrials.gov/about-site/terms-conditions.

ClinicalTrials.gov: none stated ClinicalTrials.gov's data carry an international copyright outside the United States: https://clinicaltrials.gov/about-site/terms-conditions.

NIH RePORTER's clinical studies and project files: Public domain (NIH RePORTER)