Digital registry database for Sickle Cell Disease patients in Uganda

Digital registry database for Sickle Cell Disease patients in Uganda

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Digital registry database for  Sickle Cell Disease patients in Uganda  has been launched . Stakeholders in the fight against Sickle Cell Disease have launched a campaign to raise funds for the establishment of a digital registry of all persons living with Sickle Cell Disease.

The database will contain the biodata of patients accessible anywhere.

This is aimed at easing access to quality and prompt care, advancing research and increasing awareness about the condition.

The drive is also seeking to facilitate the purchase of 100,000 smartphones to be distributed to sickle cell patients.

This initiative aims to promote telemedicine, an innovation that enables users to reach a medical care provider from anywhere in the country and access treatment promptly.

It also helps with monitoring of the wellbeing of the patient and cuts down on care costs like transport fares.

The campaign is a partnership between the Ministry of Health, CTI Africa and the Uganda Sickle Cell Rescue Foundation.

During the launch at the ministry headquarters on Friday, Permanent Secretary Diana Atwine said the chronic nature of the disease requires patients to access care in real time because of the crises they go through unexpectedly. 

“They should access services when they need them. Many have not sought care, while others resort to witchcraft because it is what is available. But with innovation, this can improve,” Dr Atwine said.

Dr Atwine said thorough awareness creation, intensifying research and screening, the country cannot only improve on care, but also eliminate the condition.

She said the prevalence of the sickle cell trait among Ugandans currently stands at 13.3 per cent.

The end goal is to cause a generation free of the disease and efforts are under way to roll out a programme to screen all teenagers, according to Dr Atwiine.

Pre-marital screening is also crucial to prevent those with the trait from passing it on to the children. 

Sickle Cell Disease is an inherited condition of blood disorders, leading to a shortage of blood and episodes of intense pains.

Mr David Mihigo, the business development director of CTI Africa, a company promoting telemedicine, said efforts to get rid of this condition cannot only be left to donors, and called on all Ugandans to embrace and contribute to the cause.

 Dr Atwine also handed over more than 14 haematology blood analysers to regional referral directors to aid in prompt and proper diagnosis. The machines worth Shs2b, are a donation from Micro Heam Scientific Ltd.

These are an upgraded version of those purchased in 2011, that the PS said had become very costly to maintain because they had outlived their time.

The machines will help improve diagnosis of diseases, monitor iron deficiencies and blood count, which are often risk factors for people living with Sickle Cell Disease.

The machine delivers results faster than the previous machines and will reduce on waiting time.

Dr Atwine said despite being in the middle of a pandemic, the government is keen to ensure  continuity of general services, offering timely and quality care. “We have so many anaemic children. If you are not able to diagnose in time and treat, it becomes recurrent. This machine can be very handy for haematological research, nutritional research, and it should not stop at care but advance knowledge through research,” Dr Atwine

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