Kenya Medical Research Institute and Smile Train, a cleft lip lobby, have called for more research to address the neglected surgical condition.
Kemri acting director general Prof Samuel Kariuki urged healthcare professionals to tap into their experiences to create attention of the decision makers.
“We encourage the surgeons, nutritionists, social workers, anaesthetists to continuously use research to voice the needs of patients with neglected surgical conditions," he said.
"We as Kemri have broken down the concepts of research, enabling the healthcare professionals to apply them to their day-to-day engagement,” Prof Kariuki added.
He spoke in Nairobi on Friday at the conclusion of a two-week training on Cleft Research Methodology which gathered cleft professionals from Kenya, Uganda, Tanzania, Rwanda, Democratic Republic of Congo and Ethiopia.
It was jointly facilitated by the Kemri Graduate School of Health Sciences and Smile Train.
Smile Train programme director for East Africa Jane-Ngige Muturi urged for more collaboration among the various fields to get the attention of the policy makers to address cleft care in the region.
“If we are to truly achieve Universal Health Coverage, we need to work together to ensure that persons abled differently are also provided with quality treatment. To better inform cleft care programs and advocate for inclusion in national health policies, it’s key to have evidence-based data,” she said.
The training sought to address a great need for quality research works on cleft, a common but underreported facial birth difference in which patients experience difficulty in breathing, eating and speaking.
Many of the children who grow up with an untreated cleft experience social stigma, live in shame and isolation, do not attend school and the ripple effect is that they fail to contribute to the economy, Smile Train said.
Causes of cleft remain unknown but risk factors include environmental factors, diet of the mother during pregnancy as well as genetics.
Smile Train has developed a research and innovation advisory council whose primary role is to provide advice on areas of research and innovation.
The organisation said it will be supporting the entire 10-week training and mentorship programme with the aim of establishing a culture that supports the development of high-quality research and innovation activities to inform cleft care programs across Africa.
The lobby said it continues to reach out to local communities, dispelling myths and misinformation that surround cleft.
It currently partners with more than 245 hospitals and over 255 local medical partners in 40 countries throughout Africa to provide free cleft surgeries and comprehensive cleft care all year round.
