SICKLE CELL TRAIT STATUS AWARENESS PROGRAM (SCTSAP)
One of the more significant initiatives the SCDAA.CT has untaken is addressing the lack of awareness of one's sickle cell trait(SCT) status as a tremendous threat to future generations due to the lack of a sufficient knowledge base of those of child bearing age relative to the genetic nature of Sickle Cell Disease. (SCD).
One of the more significant programs we have undertaken is launching our Sickle Cell Trait Status Awareness Program targeting at-risk populations of child bearing age. In our research of statistical data, we have found, in working with the CT Dept of Public Health/ Newborn Screening Program, that CT has experienced a significant rise in newborns screening exceeding 17% over the last 5 years based on data available recently.
We have launched this program in partnership with the City of New Haven's Department of Public Health to drive awareness and to some degree prevention relative to those seeking a marriage license within the Department of Vital Statistics. The program entails driving awareness of sickle cell disease and the importance of the knowledge base of both partner's sickle cell trait(SCT) status, as one contemplates marriage. However, the more important aspect of our intervention is a questionnaire design to better understand both the quantitative and qualitative aspects of an individual's knowledge base in this at-risk population seeking a marriage license. We are hopeful that within the next two quarters we will be able to analyze the data from our survey tool in the hope of better informing future educational or access interventions initiatives within the population.
As noted in our mission statement it is our plan to migrate our Sickle Cell Trait Awareness Program to other urban centers across Southern CT and publish the findings of our study. We will hopefully obtain sampling data from the CT State Newborn Screening program to further evaluate our intervention to drive awareness and therefore prevention. It is our hope that if this intervention model has merit within other urban centers in Southern CT we can, pending additional resources, replicate this innovative new model much more broadly.
We are very mindful that our study at this point in time includes only a subset of our urban-targeted population and will be seeking new partners and venues to increase the N of this study and intervention to benefit CT citizens and those beyond our borders