A new national registry for patients with sickle cell disease (SCD) has been officially launched in Bahrain in a major step towards improving healthcare services for those living with the genetic condition.
The initiative aims to collect and track vital patient data to support more effective treatment plans, enhance healthcare outcomes and strengthen scientific research.
Introduced through a collaboration between Government Hospitals, the Bahrain Sickle Cell Society and several other government organisations, the database will also be used exclusively within Bahrain for medical studies and the publication of scientific journals and research papers.
Bahrain Sickle Cell Society chairman Zakariya Al Kadhem told the GDN that the registry marks an important milestone in enhancing healthcare quality services in the kingdom. “There are currently 6,700 patients registered across Government Hospitals in Bahrain, and the database will include 92 data categories for each patient,” he said.
He noted that the actual number of people living with SCD in Bahrain is likely higher, as some patients are not currently registered within the government healthcare system.
“The categories will cover a wide range of medical details, including whether patients have undergone surgeries or hip replacements, been admitted to intensive care units, received MRIs or antibiotics, had their spleens removed and the types of chronic complications they experience, along with the medications they take.”
Mr Al Kadhem explained that centralising and analysing this data would provide healthcare professionals and decision-makers deeper insight into the effectiveness of treatments and help identify areas requiring improvement. “For example, we will be able to determine how many patients underwent a specific surgery, whether it was successful or unsuccessful, and the reasons why,” he said. “This information can then be used to help guide future cases, although every patient has an individual condition and experience.”
SCD is a genetic condition that causes red blood cells to become rigid and C-shaped, restricting blood flow throughout the body. Symptoms can vary significantly from person to person depending on genetic factors, environmental conditions and stress tolerance.
While some patients experience mild anaemia and fatigue, others suffer severe and life-threatening complications, including intense pain crises, organ damage and strokes.
Mr Al Kadhem said that while Bahrain is already regarded as advanced in the treatment of SCD, access to more detailed statistics and patient information would help elevate healthcare standards even further and encourage greater international medical collaboration.
“The registry could also contribute to increasing life expectancy rates for SCD patients in Bahrain, which currently stands at 68 years – up from 42 years in 2014,” he said.
The figure remains significantly higher than in several other countries, such as 54 in the US, 32 in Brazil and less than 40 in India.
In parts of Africa, particularly sub-Saharan Africa, life expectancy remains critically low. Estimates suggest that between 50 and 90 per cent of children born with the condition die before the age of five, while those who survive childhood often have a life expectancy of around 21.
“We started holding events to celebrate patients who lived beyond the age of 70,” he said. In 2024, 17 elderly SCD patients were honoured during a special ceremony at the Gulf Hotel Bahrain, with some recipients reaching the age of 97.
“This highlights how far the kingdom has come in treating patients and how much we have learned over the years,” he said, adding that Bahrain continues to strive to improve healthcare services for patients with chronic illnesses.
The latest initiative is timely as World Sickle Cell Day will be observed shortly.
The global event takes place next month
It takes place annually on June 19 to raise global awareness about sickle cell disease and its impact on patients and their families.
The United Nations officially designated this day in 2008 to recognise the disorder as a major public health issue.
Mr Al Kadhem recently attended a conference in New Delhi to share Bahrain’s experience in advancing healthcare services and managing chronic illnesses, while also raising awareness about SCD.
He said efforts are ongoing to build strategic partnerships with international medical institutions and exchange expertise to develop comprehensive care and awareness programmes.
Mr Al Kadhem has also delivered talks in countries including Saudi Arabia, Spain, the UK and more.
In 2023, Bahrain approved Endari, a medication used to help treat SCD patients from the age of five. Bahrain became the second country GCC country to register the treatment.
In addition, the Bahrain Oncology Centre (BOC) became one of the first centres in the world to offer ground-breaking CASGEVY (exagamglogene-autotemcel or ‘exa-cel’) gene therapy to SCD and transfusion dependent thalassaemia.
julia@gdnmedia.bh
&uuid=(email))