Registry of Outcome Measures

Review / Selection

The review tree is designed to support the co-ordinated reviews of outcome measures with respect to their application for a specific disease. It aims to record a range of information, from the outcome measures that are being considered in the review, to the final determination of the review. The idea is to make this information available to all members of a review group from a single location and to make the information learned during the review available to other researchers.

Diseases ( Expand All | Collapse All )
- Duchenne Muscular Dystrophy: COM 2010
  - Pathology
    - a. Pre-symptomatic
    - b. Early Ambulatory
    - c. Late Ambulatory
    - d. Early Non-Ambulatory
    - e. Late Non-Ambulatory
  - Impairment
    - a. Pre-symptomatic
    - b. Early Ambulatory
    - c. Late Ambulatory
    - d. Early Non-Ambulatory
    - e. Late Non-Ambulatory
  - Function/Activity
    - a. Pre-symptomatic
      - 10 Meter Walk Time Test
    - b. Early Ambulatory
      - 10 Meter Walk Time Test
      - Time to Climb 4 Stairs
    - c. Late Ambulatory
      - 10 Meter Walk Time Test
      - Time to Climb 4 Stairs
    - d. Early Non-Ambulatory
    - e. Late Non-Ambulatory
  - Handicap/Participation
    - a. Pre-symptomatic
    - b. Early Ambulatory
    - c. Late Ambulatory
    - d. Early Non-Ambulatory
    - e. Late Non-Ambulatory
  - Other
    - a. Pre-symptomatic
    - b. Early Ambulatory
    - c. Late Ambulatory
    - d. Early Non-Ambulatory
    - e. Late Non-Ambulatory
- Dysferlinopathy - 2010
  - Impairment
    - MMT - Ambulatory
      - MMT for Dysferlinopathy; Jain Foundation 2010 (notes)Have we missed any muscles? Should we exclude any?
    - MMT - Non-Ambulatory
      - MMT for Dysferlinopathy; Jain Foundation 2010 (notes)Have we missed any muscles? Should we exclude any?
    - QMT - Ambulatory
      - QMT for Dysferlinopathy; Jain Foundation 2010 (notes)Have we missed any muscles? Should we exclude any?
    - QMT - Non-Ambulatory
      - QMT for Dysferlinopathy; Jain Foundation 2010 (notes)Have we missed any muscles? Should we exclude any?
  - Function/Activity
    - Functional Scales - Ambulatory
      - Jebsen
      - Adult Ambulatory Neuromuscular Assessment
      - Motor Function Measure for Neuromuscular Diseases
    - Functional Scales - Non-Ambulatory
      - Jebsen
      - ABILHAND
      - ACTIVLIM: a Rasch-built measure of activity limitations
      - Arm Activity Measure
      - Egen Klassifikation (notes)EK2? Not required as swallowing etc not usually a problem?
    - Timed Tasks - Ambulatory
      - Rise from Chair
      - Rise from Floor
      - 10 Meter Walk Time Test
      - 10 Metre Walk/Run
      - 6 Minute Walk Test
      - 9 Hole Peg Test
      - Time to Climb 4 Stairs
      - Time to Descend 4 Stairs
      - Timed Up and Go
    - Timed Tasks - Non-Ambulatory
      - 9 Hole Peg Test
  - Handicap/Participation
    - Occupational Assessment
      - Canadian Occupational Performance Measure (notes)Query suitability to trials - consistency?
  - Other
    - Quality of Life
      - Individualised Neuromuscular Quality of Life
- Facioscapulohumeral Muscular Dystrophy
  - Pathology
    - Genetic Defect
    - Neurophysiology
  - Impairment
    - Muscle Atrophy
      - CT Imaging
      - Creatine Excretion
      - MR Imaging
      - Dual-energy X-ray Absorptiometry
    - Muscle Weakness
      - MMT for Muscle Disease inc FSH: Wyeth 2007 (notes)This was used in a trial that looked at FSH but also LGMD and BMD
      - QMT for Muscle Disease inc FSH: Wyeth 2007
      - MMT for Facioscapulohumeral Dystrophy; Personius 1994
      - QMT for Facioscapulohumeral Dystrophy: Personius 1994
      - QMT for Facioscapulohumeral Dystrophy; van der Kooi 2004
  - Function/Activity
    - Functional Scales Used in Facioscapulohumeral Dystrophy
      - Italian FSHD Evaluation Scale: Tupler XXXX (notes)See www.fshd.it for details
      - Upper and Lower Limb Functional Scale: Personius 1994
    - Functional Tasks Used in Facioscapulohumeral Dystrophy
      - 30 feet (9.14m) Walk Time
      - Drink 180ml (6ozs) Timed Test
      - From Supine to Standing Time test
      - Pinch Grip B & L Pinch Gauge
      - Pinch Grip Jaymar Pinch Gauge
      - Time to Climb 3 Stairs
      - From Sitting to Standing Position Time Test
      - JAMAR Hydraulic Hand Dynamometer
      - Time to Climb 4 Stairs
  - Handicap/Participation
    - Handicap Measures
  - Other
    - Health Status Measures
      - FSHD Specific Health Status Measure: Heatwole XXXX
    - Quality of Life Measures
- Inclusion Body Myositis
  - Pathology
    - Muscle Inflammation
    - Neurophysiology
      - Electromyography
    - Protein Aggregation
  - Impairment
    - Muscle Atrophy
      - Creatine Excretion
      - DEXA
      - Volumetric imaging (CT or MRI)
    - Muscle Weakness
      - MMT for Inclusion Body Myositis: Leff 1993 (notes)Michael Rose to add detailed record of OM to ROM.
      - MMT for Inclusion Body Myositis; Badrising 2002
      - MMT for Inclusion Body Myositis; Muscle Study Group 2001
      - MMT for Inclusion Body Myositis; Rutkove 2002
      - MMT for Inclusion Body Myositis; Walter 2000
      - MMT for Inclusive Body Myositis; Dalakas 1997
      - QMT for Inclusion Body Myositis; Badrising 2002
      - QMT for Inclusion Body Myositis; Lindberg 2003
      - QMT for Inclusion Body Myositis; Rutkove 2002
  - Function/Activity
    - Used In IBM RCTS To Date (MRR)
      - Handgrip Myometry
      - Neuromuscular Symptoms Score
      - Stair Climb Test
      - Timed Rise From Chair
      - 15 Feet Walk Time
      - 6 Minute Walk Test
      - 9 Hole Peg Test
      - ALS Functional Rating Scale
      - Arm Outstretch Time
      - Barthel Index
      - Brooke's Grading
      - Get Up and Go Test
      - Inclusion Body Myositis Functional Rating Scale
      - Modified Convery Assessment Scale
      - Rivermeade Mobility Index
      - Ultrasound Assessment of Swallowing
  - Handicap/Participation
    - Handicap Measures
  - Other
    - Quality of Life Measures
      - Individualised Neuromuscular Quality of Life
      - SF-36v2® Health Survey
- Myotonic dystrophy
  - Pathology
    - Muscle pathology
    - Repeat length, spliceopathy
      - Repeat length, splieopathy, other biomarkers
    - Trinucleotide repeat expansion
  - Impairment
    - Muscle atrophy
      - Creatine excretion
      - DEXA
      - MRI volumetric
    - Muscle weakness
      - The Muscular Impairment Rating Scale (MIRS)
      - Gross Motor Function Measure
      - Measuring Strength with the CITEC Hand-held Dynamometer
      - MyoStret
      - Quantitative Force Measurement By Torque Measurement M3 Diagnos