Natural History in CCFDN and IBM Syndromes
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ClinicalTrials.gov Identifier: NCT01902940 |
Recruitment Status :
Completed
First Posted : July 18, 2013
Last Update Posted : September 1, 2015
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Condition or disease | Intervention/treatment |
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Inclusion Body Myositis, Sporadic Inclusion Body Myopathy, Autosomal-recessive Inclusion Body Myopathy, Autosomal-dominant Congenital Cataracts, Facial Dysmorphism, And Neuropathy | Other: Natural History |
Study Type : | Observational |
Actual Enrollment : | 350 participants |
Observational Model: | Cohort |
Time Perspective: | Retrospective |
Official Title: | Retrospective Cohort Study Assessing the Natural Course in Congenital Cataract Facial Dysmorphism Neuropathy Syndrome (CCFDN) and Sporadic and Hereditary Inclusion Body Myopathies (IBM) |
Study Start Date : | June 2013 |
Actual Primary Completion Date : | September 2013 |
Actual Study Completion Date : | October 2013 |

Group/Cohort | Intervention/treatment |
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Natural History
Assessment of natural history in IBM and CCFDN
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Other: Natural History
Assessment of natural history in IBM and CCFDN |
- Manual Muscle Strength assessed by Medical Research Council (MRC) [ Time Frame: 6-months intervals ]Retrospective

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Ages Eligible for Study: | Child, Adult, Older Adult |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
Inclusion Criteria:
- Clinical and/or genetic diagnosis of Congenital Cataract Facial Dysmorphism Neuropathy Syndrome (CCFDN) and sporadic and hereditary inclusion body myopathies (IBM)
Exclusion Criteria:
- Additional neuromuscular diseases

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01902940
Germany | |
Friedrich-Baur-Institut, Ludwig-Maximilians-University of Munich | |
Munich, Bavaria, Germany, 80336 |
Study Chair: | Maggie C Walter, MD, MA | Friedrich-Baur-Institute, Dept. of Neurology |
Responsible Party: | Maggie Walter, Professor, MD, MA, Ludwig-Maximilians - University of Munich |
ClinicalTrials.gov Identifier: | NCT01902940 |
Other Study ID Numbers: |
CCFDN-IBM-2013 CCFDN-IBM-2013 ( Other Identifier: Friedrich-Baur-Institute ) |
First Posted: | July 18, 2013 Key Record Dates |
Last Update Posted: | September 1, 2015 |
Last Verified: | August 2015 |
Muscular Diseases Myositis Myositis, Inclusion Body Cataract Congenital Abnormalities |
Lens Diseases Eye Diseases Musculoskeletal Diseases Neuromuscular Diseases Nervous System Diseases |