Health is difficult to define and measure. There is a great deal of variation in the healthy population- no two people are the same. Yet we need to know what it means to be healthy in order to manage disease and disability and to evaluate the effectiveness of treatments in clinical trials.
Physical function, the ability to perform the physical activities of day-today life, is an important indicator of health across all stages of development and ageing. Health professionals and clinical researchers use a range of tests, known as outcome measures, to measure physical function. Examples of outcome measures include tests of strength, balance and walking, as well as questionnaires that assess function, pain or quality of life from the individual’s perspective.
Outcome measures are used in clinical practice to identify a problem (impairment or disability) by comparing scores to 'normal' reference values. Reference data for outcome measures are also used in clinical trials to evaluate the effectiveness of treatments as they provide a comparison to normal - similar to a control group. However, prior to the 1000 Norms Project there was a lack of age and sex-specific normative reference data for many common outcome measures.
Led by Professor Joshua Burns, in 2014-2015, experienced physiotherapy researchers at the University of Sydney collected data for a comprehensive set of outcome measures assessing key aspects of physical function and self-reported health.
One thousand healthy Australians aged from 3-101 years volunteered their time to take part in a physical assessment. The 1000 Norms Project produced over one million data points, generating a comprehensive normative reference dataset. These data points have been crucial for understanding the severity of patients with a variety of disorders, and most importantly their response to treatment.
Around the world, the age-and sex-matched normative reference data from the 1000 Norms Project are being used to pioneer the development of whole-of-life functional scales, developing responsive clinical outcome assessments for a range of neurological and musculoskeletal disorders.
The following outcome measures were assessed in 1000 people:
The data from all of the performance measures collected in the 1000 Norms Project has now been “liberated” and is freely available at clinicaloutcomemeasures.org along with clinical outcome measures including the Charcot-Marie-Tooth disease Pediatric Scale (CMTPedS), CMT Infant Scale (CMTInfs), CMT Functional Outcome Measure (CMT-FOM), CMT Neuropathy Score (CMTNS).
Funding for the study was granted by the National Health and Medical Research Council of Australia and the Australasian Podiatry Research Fund.
The 1000 Norms Project has generated a number of publications in high impact journals, including two in Neurology. Normative reference data for the physical and self-reported outcome measures collected through the 1000 Norms Project are reported in these journal articles. In addition, publications have arisen from collaborations with researchers and clinicians within Australia and internationally.