In a bid to track those with cerebral palsy from childhood to adulthood, Singapore's first cerebral palsy registry was launched yesterday.
It is a joint effort by the Cerebral Palsy Alliance Singapore (CPAS), KK Women's and Children's Hospital (KKH) and the National University Hospital.
Currently, there is no official database of people with cerebral palsy for researchers or welfare groups to tap on, said CPAS chairman Kevin Lim.
Cerebral palsy is a disorder which results in loss of muscle control due to brain damage.
It is not curable and can come about before or during birth, or as an effect of an illness or injury to young children.
The registry was launched at CPAS' 60th anniversary dinner at the Marina Bay Sands, as part of the hotel's Sands for Singapore Charity Festival. Minister for Social and Family Development Tan Chuan-Jin was guest of honour.
Dr Lim said that with the new registry, CPAS is going one step further to follow up on those who tend to "fall off the radar" after they reach adulthood.
Since January, CPAS began a serious effort to start an official, opt-in registry after years of talks, drawing $50,000 from its share of the Community Chest Care and Share fund for a secure IT database system and to hire research assistants.
It also had to obtain ethics approval from the SingHealth Centralised Institutional Review Board.
"Cerebral palsy is unlike chicken pox, where if you are diagnosed with it, the doctor will need to report the condition to the Health Ministry (as it is a communicable disease). With cerebral palsy, there is hardly any tracking at all once (the children) graduate from the various special schools," said Dr Lim.
Because of this, CPAS often finds those with cerebral palsy effectively disappear from society if they did not manage to get a job after graduation.
They typically resurface when something unfortunate happens, or they get flagged by concerned members of the public, said Dr Lim.
Researchers or welfare organisations can only estimate the number of people with cerebral palsy here. Three out of every thousand people have the condition, but this figure is based on international estimates, not empirical data.
This will hopefully change with the registry, which will contain data about children born after 2011 with the disorder, including clinical data, contact information and serial functional outcome scales - which track the level of mobility of those with cerebral palsy - of those who consent to be included in the database.
The registry will initially recruit from the outpatient clinic and inpatient wards of KKH, as well as clients of CPAS.
Once the database is established, CPAS will look at including more institutions to join the registry, such as other hospitals or volunteer welfare organisations.
CPAS currently serves 700 clients, aged between a few months and 55 years.
The registry aims to further research and understanding of the condition here, and will also assist in the future planning of services and resources for those with cerebral palsy.
Said Dr Lim: "Being the first of its kind in Singapore, the cerebral palsy registry offers consolidated data on a common platform that would be instrumental for future medical research and improvement of services for persons with cerebral palsy."
If the Government wants to adopt the registry as its own when it eventually gains steam, Dr Lim said CPAS will have achieved its aims.
He added that the registry allows academics to glean "crucial insights" and help with different aspects of the condition, including prevention, diagnosis and management.