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 - Jain Foundation - 2010
  - Impairment
    - Manual Muscle Testing
      - MMT for Dysferlinopathy; Jain Foundation 2010
    - QMT - Fixed Myometry
      - QMT for Dysferlinopathy; Jain Foundation 2010
    - QMT - Hand Held Myometry
      - QMT for Dysferlinopathy; Jain Foundation 2010
    - QMT - Rejected
      - Nil
  - Function/Activity
    - Functional Scales
      - Jebsen Test
      - ACTIVLIM: a Rasch-built measure of activity limitations
      - Adult Ambulatory Neuromuscular Assessment
      - Egen Klassifikation (notes)Items 1 - 10
      - Motor Function Measure for Neuromuscular Diseases, 32 Items (notes)MFM-32
      - North Star Ambulatory Assessment (notes)Adapted version.
    - Functional Scales - Rejected
      - ABILHAND
      - Arm Activity Measure
    - Timed Tasks
      - 10 Metre Walk/Run
      - 6 Minute Walk Test
      - Time to Climb 4 Stairs
      - Time to Descend 4 Stairs
      - Timed Up and Go
    - Timed Tasks - Rejected
      - Rise from Chair
      - Rise from Floor
      - 9 Hole Peg Test
  - Handicap/Participation
    - Occupational Assessment - Rejected
      - 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; Kissel
      - MMT for Facioscapulohumeral Dystrophy; Lochmüller
      - 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
      - Drink 6oz of Water
      - From Supine to Standing Time test
      - Pinch Grip B & L Pinch Gauge
      - Pinch Grip Jaymar Pinch Gauge
      - Time to Climb 3 Stairs
      - Go 30 Feet
      - JAMAR Hydraulic Hand Dynamometer
      - Stand up from Chair
      - Time to Climb 4 Stairs
      - Time to Descend 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; Badrising 2002
      - MMT for Inclusion Body Myositis; Barohn (notes)6 point scale - clinic, 10 point scale research (data = yes)
      - MMT for Inclusion Body Myositis; Benveniste (notes)6 Point Scale (data = yes)
      - MMT for Inclusion Body Myositis; Dalakas 1997
      - MMT for Inclusion Body Myositis; De Bleecker (notes)6 Point Scale (data = no)
      - MMT for Inclusion Body Myositis; Hanna (notes)6 Point Scale (data = yes)
      - MMT for Inclusion Body Myositis; Hilton Jones
      - MMT for Inclusion Body Myositis; Leff 1993 (notes)Michael Rose to add detailed record of OM to ROM.
      - MMT for Inclusion Body Myositis; Mastaglia (notes)6 Point Scale (data = yes)
      - MMT for Inclusion Body Myositis; Miller (notes)10 Point Scale (data = yes)
      - MMT for Inclusion Body Myositis; Muscle Study Group 2001
      - MMT for Inclusion Body Myositis; Novartis
      - MMT for Inclusion Body Myositis; Rutkove 2002
      - MMT for Inclusion Body Myositis; Schmidt (notes)6 Point Scale (data = yes)
      - MMT for Inclusion Body Myositis; Vissing (notes)6 Point Scale (data = yes)
      - MMT for Inclusion Body Myositis; Walter 2000
      - QMT for Inclusion Body Myositis; Badrising 2002
      - QMT for Inclusion Body Myositis; Barohn
      - QMT for Inclusion Body Myositis; Benveniste
      - QMT for Inclusion Body Myositis; Dalakas 2009
      - QMT for Inclusion Body Myositis; Hanna
      - QMT for Inclusion Body Myositis; Lindberg 2003
      - QMT for Inclusion Body Myositis; Lowes
      - QMT for Inclusion Body Myositis; Novartis
      - QMT for Inclusion Body Myositis; Rutkove 2002
      - QMT for Inclusion Body Myositis; Walter
      - QMT for Inclusion Boidy Myositis; Vissing
  - 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
      - Amyotrophic Lateral Sclerosis 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
    - Used in Other Studies
  - 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
      - Chatillon Dynamometer
      - Functional Muscular Testing
      - Hand Grip Dynamometry
      - Walk Handicap Scale
      - Gross Motor Function Measure
      - MMT for Facioscapulohumeral Dystrophy; Personius 1994
      - MMT for Myotonic Dystrohpy; Vandenbergh (notes)Data is available - 6 point scale
      - MMT for Myotonic Dystrophy - Puymirat
      - MMT for Myotonic Dystrophy; Angelini (notes)Data is available - 10 point scale
      - MMT for Myotonic Dystrophy; Campbell
      - MMT for Myotonic Dystrophy; Griggs 1989
      - MMT for Myotonic Dystrophy; Kley
      - MMT for Myotonic Dystrophy; Schoser (notes)Data is available - 6 point scale
      - MMT for Myotonic Dystrophy; Spuler (notes)Data is available - 6 point scale.
      - MMT for Myotonic Dystrophy; Vanengelen
      - Measuring Strength with the CITEC Hand-held Dynamometer
      - Muscular Impairment Rating Scale
      - MyoStret
      - MyoTone Test
      - QMT for Myotonic Dystrophy; Campbell
      - QMT for Myotonic Dystrophy; Griggs 1989
      - QMT for Myotonic Dystrophy; Rochester
      - Quantitative Force Measurement By Torque Measurement M3 Diagnos
  - Function/Activity
    - Brain Function/Cognitive
      - 60-Item Boston Naming Test (BNT)
      - BDI-pc
      - California Verbal Learning Test (CVLT)
      - Category Fluency Test and Colour Word Test
      - Delis-Kaplan Executive Function System (D-KEFS)
      - Design Fluency Test
      - Five-Factor Inventory (NEO-FFI)
      - GHQ-12
      - Hooper Visual Organisation Test (HVOT)
      - Language Abilities
      - Letter and Category Fluency Test
      - MRI
      - Neuropychological Test Battery (notes)Consider adding: MRI, EKG, Holter, Spirometry, QoL
      - Proverb Test
      - Raven's Standard Progressive Matices (NEO)
      - Rey-Osterrieth Complex Figure Test (ROCFT)
      - Rosenberg Self Esteem Scale 20 (RSES)
      - Ruff 2-7 Selective Attention Test
      - SCL-90
      - Self Efficacy Scale (SES)
      - Sorting Test
      - Stroop
      - Stroop Colour and Word Test
      - Symbol digit subtest (WAIS)
      - Symptom Checklist-90-Revised
      - Tower Test
      - Trail Making Test
      - Twenty Questions Test
      - Wechsler Adult Intelligence Scale-Revised (WAIS-R)
      - Word Context Test
      - van Sonderen Social Support Inventory
    - Cardiac
      - EKG
    - Other
      - 2 Minute Walk Test
      - Berg Balance Scale
      - Box and Blocks
      - Checklist Individual Strength (CIS)
      - Child Behaviour Checklist
      - GSGC Scale
      - Handicap Walk Scale
      - IQoL
      - Jebsen Hand Function Test
      - LIfe-H Measure (Daily Activities/Social Roles)
      - Microfet-2
      - Osler Test
      - Standing from Lying (Supine)
      - Timed Typing
      - Timed Walk?
      - Timed Writing
      - Upper Extremity Functional Index (UEFI)
      - 10 Metre Walk/Run
      - 6 Minute Walk Test
      - 9 Hole Peg Test
      - ACTIVLIM: a Rasch-built measure of activity limitations
      - FIM instrument
      - JAMAR Hydraulic Hand Dynamometer
      - Motor Function Measure for Neuromuscular Diseases, 20 Items
      - Motor Function Measure for Neuromuscular Diseases, 32 Items
      - Muscular Impairment Rating Scale
      - PedsQL Neuromuscular Module (notes)Campbell: Parent and Child; Fatigue Scale
      - SF-36v2® Health Survey
      - Sickness Impact Profile
      - Step Activity Monitor
      - Time to Climb 4 Stairs
      - Time to Descend 4 Stairs
      - Time to Run or Walk 30 Feet
      - Timed Up and Go
    - Pulmonary
      - FVC
  - Handicap/Participation
    - Sleep
      - Epworth Sleepiness Scale
  - Other
    - Pain
      - McGill Pain Questionnaire
    - Quality of Life
      - Euroqol EQ-5D
      - Individualised Neuromuscular Quality of Life
      - Perceived Quality of Life Scale
      - Quality of Well-Being Scale - Self Administered
      - SF-36v2® Health Survey
      - Schedule for the Evaluation of Individual Quality of Life
      - Sickness Impact Profile
      - TNO-AZL Questionnaire for Adult's Health-related Quality of Life
    - Sleep
      - SCL Sleep
      - Epworth Sleepiness Scale