Why was my child born with an oral cleft? Will my future children have the same condition? These are all valid questions and, at the time being, there isn’t a lot of information to accurately answer them.
Dr. Lateefa Alkharafi
Diplomate of the American Board of Orthodontics
Ministry of Health – Kuwait
Why was my child born with an oral cleft? Will my future children have the same condition? What about my baby’s children? These are all valid questions and, at the time being, there isn't a lot of information to accurately answer them. This is where a registry becomes necessary.
A registry is a collection of information including (but not limited to) the patients’ diagnoses, the received treatment, the performed procedures, the devices that have been used, and/or the outcomes for patients who share a condition or certain characteristics (such as oral clefts in our case). This data is used to evaluate specific outcomes for clinical, scientific, or research purposes.
Registries are very important for the health sector; as they facilitate the advancement in knowledge. When a standardized set of data is collected, a registry enables health professionals and researchers to make systematic comparisons across data sets, such as geographic locations, consanguineous marriages, age of parents, and ethnic backgrounds. This data is used to help in looking for associated variables that increase the chance for this specific malformation to occur. Healthcare personnel can draw conclusions based on mass number of collected data. It can also show what the best practices are that will lead to the best outcomes, and allow researchers to estimate the prevalence, incidence, and severity of oral clefts.
Registries can facilitate research in a way that it can be used prospectively to quickly identify the patients’ eligibility for a new device to be used, or retrospectively to analyze the effectiveness of an intervention. In addition, it can identify the causing factors that could be specific to a certain ethnicity for example.
Kuwait’s oral clefts registry records information on the patients’ specific mutation, symptoms, previous treatments, ethnicity, lifestyle including the mother’s diet during the vital stages of pregnancy, and the quality of life. This will provide insight on the epidemiology or any genotype-phenotype correlations; and how the lifestyle affects the chances of giving birth to a baby with oral cleft; and how the quality of life is affected.
Understanding all the involved factors will lead us to better understand this condition, thus preventing it; in order to decrease both the toll it takes on the families with patients receiving treatment from the age of few days to the age of 20 years old or above, and the financial burden on the country.
International collaboration is also vital to get a sufficient amount of information; in order for the rare-disease patient registries to increase in size; thus giving more valid scientific results. This is especially important in our GCC region where many share the same ethnic background.
Our databank is maintained on a secure server, and only allowed authorized researchers and clinicians with approved ethical proposals will be able to access the anonymized dataset to ensure the privacy of registrants.