Press Release WHO/71 14 October 1998 PARKINSON'S DISEASE – A UNIQUE SURVEY LAUNCHED The first international study involving patients with Parkinson's disease, their carers and clinicians has been jointly launched by the World Health Organization (WHO), the European Parkinson's Disease Association (EPDA) and the US-based National Parkinson Foundation (NPF). The study, known as the Global Parkinson's Disease Survey (GPDS), will investigate the factors which are believed to influence the quality of life for people affected by this debilitating condition. Inspired by an original concept of the EPDA -- an association comprising 29 European organisations -- the survey will cover three continents and involve six countries: Canada, Italy, Japan, Spain, UK and USA. In total, more than 2000 randomly chosen patients, carers and specialist clinicians will be interviewed face to face by professionally trained medical interviewers. "The quality of life issues, including those related to health, will most probably become one of the central problems of sustainable development in the 21st century. These issues are of paramount importance for both healthy populations and, especially, people affected by chronic disorders," commented Dr Yasuhiro Suzuki, an executive director at WHO in Geneva. Two studies have already provided clues that health-related quality of life may be affected by factors other than disease severity and drug therapy: A US-based study suggested that health-related quality of life might be seriously misjudged if inferred from clinical observations only. Another, more recent study in the UK has demonstrated that quality of life may not be strongly correlated with severity of Parkinson's disease but is affected by additional factors, such as the patients' access to a support group, the ability to gain the information and quality of contact they require, their use of non-drug therapies, etc. The GPDS will investigate these additional factors using a comprehensive, statistically valid and internationally acceptable protocol that has been developed within the framework of the WHO Working Group on Parkinson's disease, which brings together experts, world-renowned practitioners and scientists, and representatives of patient organisations, including EPDA and NPF. "Only by improving our knowledge of the disease and listening to those involved, can we expect to be able to make a real difference to people's lives," said Mary Baker, President of the EPDA. The GPDS will be completed in the first quarter of 1999. It may take another 6 to 8 months to process and analyse collected data, as well as to publish results, which will be used to promote better management of patients with Parkinson's disease. Parkinson's disease is a progressive neuro-degenerative disorder, which affects movement or the control of movement, including speech and 'body language'. It is known to affect people from all ethnic groups. Although the incidence is higher in the elderly population, more than one in ten sufferers is diagnosed by the age of 50. Like many other neurological illnesses, Parkinson's disease is chronic, progressive and, at the moment, incurable. The main treatment for it is drug therapy, although surgical techniques are also used. Research is continuing into the use of foetal brain tissue implants, but as yet the results are inconclusive. Although some people in the later stages may become mentally confused or demented, most retain their intellectual facilities while living in a body which is becoming increasingly disabled. This, in itself, can contribute to the boredom, social isolation and depression commonly experienced by sufferers. In 1990, worldwide there were an estimated 4 million people suffering from Parkinson's disease. There are few reliable data of global prevalence or morbidity of Parkinson's disease. In Europe, for example, the overall prevalence of the disease is estimated to be 1.6 per 100 in persons over 65 years of age. Because of the ageing of the world population, the importance of Parkinson's disease as a public health issue is expected to increase. The emphasis in WHO's efforts is placed on the promotion of epidemiological studies and health statistics; assessment of cost benefits and health needs; the organization of services; and on raising public and professional awareness of Parkinson's disease. For further information, journalists can contact Igor Rozov, Health Communications and Public Relations, WHO, Geneva. Telephone (4122) 791 25 32. Fax (4122) 791 48 58. Email: rozovi@who.int All WHO Press Releases, Fact Sheets and Features as well as other information on this subject can be obtained on Internet on the WHO home page http://www.who.int/