Thus, community-wide information sources are essential. Also when pooling information, contributors from the several communities need to feel comfortable that an unusual local circumstance hasn’t influenced the information and thus distorted the total report.

Obtaining multi-centered, population based data over time that are collected in a mutually agreed upon manner is a difficult scientific and organizational undertaking. Such studies have been organized in the USA for the collection of information about common disorders: cancer, heart disease, the flu, but not for less common disorders like cerebral palsy. However, a cooperative, multi-centered, comprehensive reporting system for cerebral palsy was able to be established in Europe in 1998. It included 14 centers in 8 countries in Great Britain and Western Europe. A first report of the data from that collaborative effort has recently been published.

The author reports the following information on 600 children with cerebral palsy from 13 geographic populations in Europe:

• The overall rate for prevalence for the period 1980-1990 was 2.08 cases per 1000 live births;

• 20.2% of the children were found to have a severe intellectual deficit and also were unable to walk;

• Among babies born weighing less than 1500g (3.3 lbs), the occurrence of cerebral palsy was more than 70 times higher compared to those weighing 2500g (5.5 lbs) or more at birth;

• The rate of the occurrence of cerebral palsy increased during the late 1980s;

• Future reports will include information about children born in the 1990s;

Comment: The general characteristics of the population of Europe in the 1970s and 1980s were quite similar to those in the USA and so the information from the European study should be generally applicable to the USA. However, the availability and utilization of prenatal care of the mother and postnatal care of the infant were quite different because of the easy accessibility in Europe of such care through government sponsored health care systems. It is also true that technically advanced diagnostic and therapeutic methodologies common in the USA such as neonatal intensive care units were often not available in government operated European health care facilities. Thus, the rate of occurrence of Cerebral Palsy and the survival rate of infants born with developmental brain damage may both be somewhat higher in the USA than in Europe during that period. Less exact data from the USA indicates this may be true.

The data for the 1990s will probably be more comparable. Nevertheless, the information rich database established in Europe is a model for meeting a reporting need that responsible organizations in the USA need to consider; for example, the P.H.S. Centers for Disease Control and Prevention (CDC). In order to initiate this development, this Foundation has already provided funds from a pilot study to establish a population based cerebral Palsy reporting system in one area of the USA.

United Cerebral Palsy Research and Educational Foundation 2002