In Spinal Muscular Atrophy and with regards this section the outcome measures we refer to are the tests used during your review appointment with the physiotherapist.
Outcome measures are also used in clinical trials. These may be to monitor the natural progression of the disease as in a natural history study like SMA REACH UK or to monitor the safety or effectiveness of a drug or a particular treatment in clinical trials. For clinical trials there is strict protocol for how outcome measures are performed and in some instances they may be used to determine inclusion and exclusion criteria for the study.
This Outcome Measure section of the SMA REACH UK website will describe the common outcome measures for used the assessment of SMA in the United Kingdom. In addition for Professionals we will also direct you to the latest SMA outcome measure research and provide you with any freely available manuals/proformas for use in everyday clinical practice.
Danielle Ramsey, 18th November 2016