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The Myotonic Dystrophy Type-1 Health Index (MDHI Type-1) Italian Translation
The Myotonic Dystrophy Health Index (MDHI) Italian Version is a survey designed to efficiently measure the overall level of disease burden in a patient with myotonic dystrophy type-1 whose native language is Italian. This disease-specific patient-reported outcome measure is designed is designed to reliably and responsively measure therapeutic benefit...
Published: 5/7/2024
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Inventor(s):
Chad Heatwole
Keywords(s):
Category(s):
Copyright
,
Informatics
,
Research Tools
The Charcot-Marie-Tooth Disease Health Index (CMT-HI)
The CMT-Health Index (CMT-HI) is a disease-specific, patient-reported, outcome measure designed to reliably and responsively measure therapeutic benefit in Charcot-Marie-Tooth disease (CMT) clinical trials. The CMT-HI may also be used to measure overall patient health in a clinical setting. It covers the 18 areas of greatest importance to the adult...
Published: 5/7/2024
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Inventor(s):
Chad Heatwole
,
David Herrmann
,
Nicholas Johnson
Keywords(s):
Category(s):
Copyright
,
Informatics
,
Research Tools
The Myotonic Dystrophy Health Index Short Form (MDHI-SF)
The Myotonic Dystrophy Health Index Short Form (MDHI-SF) is a brief survey designed to efficiently measure the overall level of disease burden in a patient with myotonic dystrophy type-1. It covers the 17 areas of greatest importance to the adult myotonic dystrophy population. This instrument was developed and validated through the outcome measures...
Published: 5/7/2024
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Inventor(s):
Chad Heatwole
Keywords(s):
Category(s):
Copyright
,
Informatics
,
Research Tools
Congenital and Childhood Myotonic Dystrophy Research Survey: Instrument for Children Ages 5 to 7 (CCMD-HI 5-7)
This is a disease-specific Patient-reported outcome measure for patients with congenital, childhood-onset, or juvenile myotonic dystrophy type-1. This instrument was developed and validated through the outcome measures laboratory at the University of Rochester and based on original questions developed for adult myotonic dystrophy patients (also see...
Published: 8/14/2023
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Inventor(s):
Chad Heatwole
,
Nicholas Johnson
,
Joanna Heatwole
Keywords(s):
Category(s):
Copyright
,
Informatics
,
Research Tools
Congenital and Childhood Myotonic Dystrophy Health Index: Instrument for Children Ages 8 to 11 (CCMD-HI 8-11)
This is a disease-specific Patient-reported outcome measure for patients with congenital, childhood-onset, or juvenile myotonic dystrophy type-1. This instrument was developed and validated through the outcome measures laboratory at the University of Rochester and based on original questions developed for adult myotonic dystrophy patients (also see...
Published: 8/14/2023
|
Inventor(s):
Chad Heatwole
,
Nicholas Johnson
Keywords(s):
Category(s):
Copyright
,
Informatics
,
Research Tools
Congenital and Childhood Myotonic Dystrophy Health Index: Instrument for Children Ages 12 to 17 (CCMD-HI 12-17)
This is a disease-specific patient-reported outcome measure for patients with congenital, childhood-onset, or juvenile myotonic dystrophy type-1. This instrument was developed and validated through the outcome measures laboratory at the University of Rochester and based on original questions developed for adult myotonic dystrophy patients (also see...
Published: 8/14/2023
|
Inventor(s):
Chad Heatwole
,
Nicholas Johnson
Keywords(s):
Category(s):
Copyright
,
Informatics
,
Research Tools
Congenital and Childhood Myotonic Dystrophy Health Index: Parent Proxy Instrument (CCMD-HI Proxy)
This is a disease-specific proxy reported outcome measure for patient with congenital, childhood-onset, or juvenile myotonic dystrophy type-1. This instrument was developed and validated through the outcome measures laboratory at the University of Rochester and based on original questions developed for adult myotonic dystrophy patients (also see UR...
Published: 5/7/2024
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Inventor(s):
Chad Heatwole
,
Nicholas Johnson
Keywords(s):
Category(s):
Copyright
,
Informatics
,
Research Tools
The Fascioscapulohumeral Muscular Dystrophy Health Index (FSHDI)
The Fascioscapulohumeral Muscular Dystrophy Health Index (FSHDI) is a disease-specific, patient reported outcome measure for FSHDI. Each question in the FSHDI was selected based on its relevance to a large muscular dystrophy population, its ability to be consistently understood by patients, its reliability during test-retest evaluation, its content...
Published: 5/7/2024
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Inventor(s):
Chad Heatwole
Keywords(s):
Category(s):
Copyright
,
Research Tools
,
Informatics
The Myotonic Dystrophy Health Index (MDHI)
The Myotonic Dystrophy Health Index (MDHI) is a disease-specific, patient reported outcome measure for myotonic dystrophy type-1 (DM1). Each question in the MDHI was selected based on its relevance to a large DM1 population, its ability to be consistently understood by patients, its reliability during test-retest evaluation, its content validity, its...
Published: 5/7/2024
|
Inventor(s):
Chad Heatwole
Keywords(s):
Category(s):
Copyright
,
Research Tools
,
Informatics