Background

PCS is currently engaged in extensive research. Members use an interdisciplinary approach – recognizing that each discipline has something to offer towards research methodology, data collection, and data analysis. PCS employs the latest data collection technology in order to learn more about global health and cleft care.

The Cleft Registry

PCS, in collaboration with the University of North Carolina at Chapel Hill, is developing a congenital anomalies registry in the West Bank, Palestine. The registry is being piloted in 2011-2012. Researchers are employing RedCap software in order to preform data collection. The project’s primary goal is to uncover disease trends in the West Bank associated with cleft lip or cleft palate. If you have any questions about this research, please contact us by email at pcsregistry@gmail.com

Benefits of the Cleft Registry

In order for parents and family members, as well as health care workers, to cooperate with the Cleft Registry, there must be clearly delineated benefits to participating in the Registry.

The major benefits of involvement in the Registry will center on early and timely identification by a wide range of professionals to the birth of a child with a cleft. This will allow the family and patient, the following:

• Immediate access to information about clefts
• Assistance with feeding, which will include access to feeding specialists, specialized bottles and nipples
• Assistance with audiological exams
• Access to protocols for all aspects of cleft care, including appointments with members of cleft teams (including Plastic, Oral Maxillofacial (OMFS) and Otolaryngololgy (ENT) surgeons)
• Coordinated care which allows communication between care specialists
• Assistance with speech therapy (amount per session 10 – 40 shekels; per month 300 shekels) with the possibility of fee reduction in group sessions and educational materials to assist families in reinforcing therapies
• Assistance and direction for future dental care
• Assistance with the cost of orthodontics, with cost reduction if materials are donated (Phase I and II cost $500; this cost is significantly reduced if materials are donated)
• Inclusion in the Registry will also generate assistance through the Palestinian Authority Ministry of Health

Research team

Hanin Al-Sheikh (Speech Language Pathologist), Emad Hussein (Surgeon), John van Aalst (Surgeon), Hala Borno (4th year medical student)