PROs for Assessment of CNS Diseases

Isis Outcomes has two PROs in the area of CNS covering Parkinson’s - the PDQ - and Amyotrophic Lateral Sclerosis (ALS) / Motor Neurone Disease (MND) - the ALSAQ. The PDQ is widely regarded as the PRO of choice for assessing Parkinson’s disease and the ALSAQ is the most widely validated measure of health status for use with patients diagnosed with ALS/MND.

The Team

Like the other Isis Outcomes PROs, the CNS scores have benefitted from their development by senior academics at the Health Services Research Unit, part of the Department of Public Health, University of Oxford. The two leading academics on the development of the CNS PROs were Professors Crispin Jenkinson and Ray Fitzpatrick. Both of the CNS scores have been developed and tested in collaboration with neurologists in both Oxford and London (Department of Neurology, St. Bartholomew’s and the Royal London Hospital School of Medicine and Dentistry). The research and subsequent development of the ALSAQ PRO was supported by the Motor Neurone Disease Association.

More about the team who developed the CNS PROs can be found here.

The PROs

Parkinson’s Disease Questionnaire – PDQ-39 & PDQ-8

The PDQ is the most widely used measure of functioning and well-being in Parkinson's Disease (PD) and generally considered the industry ‘gold standard’ for the measurement of health status in PD. The PDQ is designed primarily for use in clinical trials of therapeutics intended to benefit individuals with Parkinson’s Disease. Licensees of the PDQ include pharmaceutical companies running clinical trials, or Contract Research Organisations (CROs) running trials on behalf of pharmaceutical clients.

Assessment of Health Status in Amyotrophic Lateral Sclerosis/Motor Neurone Disease - ALSAQ–40 & ALSAQ-5

The ALSAQ is a subjective health measure designed specifically to assess areas of importance to patients with ALS (also known as Lou Gehrig’s disease). The ALSAQ is the only rigorously designed and validated subjective health status measure that can be used to evaluate the impact of treatment regimes on ALS patients.