Primary Goal

The initial purpose of this project is to host and maintain a Pakistan wide cerebral palsy population register which will be known as the Pakistan Cerebral Palsy Register (PCPR). This register will collect data from each of the provinces on the incidence and prevalence of cerebral palsy. The Pakistan-wide register will supply data to researchers to investigate the cause and prevention of cerebral palsy; and enable service providers to plan for the present and future service provision needs of people with cerebral palsy. The aim is to bring together pediatricians, pediatric neurologists, epidemiologists and therapists from within the region in order to disseminate knowledge about cerebral palsy through epidemiological data to develop best practice in monitoring trends in CP, and to raise standards of care for children with cerebral palsy.

Short Term Goal

Our short term goal is to investigate the prevalence of CP in Pakistan, this project will require liaising local and government organizations and assess what the ground realities are. We have already started speaking to some local organizations and the initial feedback tells us that there is virtually no data on the prevalence of CP. The government does not seem to have the appetite or will to initiate any such program. The study will have to been funded and done privately. Working hard to find the skill set and resources to kick the process into action.

In addition to this we are looking to assist the Akbar Kare Institute (AKI) for Cerebral Palsy in areas such as providing assistive devices for
its ever growing number of child patients.

Long Term Goal

The long term goal is not only to extend this register of children with cerebral palsy within the sub-continent and eventually collaborate the register with member countries in the region but to include adults with CP under the same register

The Motivation

Cerebral palsy occurs in about three babies per 1000 live births. Measuring trends in prevalence over time and to understand better the causes of the cerebral palsy and therefore a register of all children born in a region with cerebral palsy can help with this. The gathered information can also help with planning services and assist parents of children with cerebral palsy to be told about research projects.