National registry for sickle cell disease is in the works
Published: 06:05 PM,May 11,2024 | EDITED : 10:05 PM,May 11,2024
Participants at the round table on sickle cell disease
Premarital testing and early checking are necessary to curb sickle cell disease (SCD) which is affecting 100-120 babies every year in Oman. The total number of patients touched 8,000 by 2023.
A national registry for SCD is currently in the process and will soon be activated besides a nation-wide campaign to create awareness against this hereditary disease, according to Prof Dr Salam al Kindi, consultant haematologist at Sultan Qaboos University Hospital.
Speaking to the Observer on the sidelines of the media round table to raise awareness of SCD and share the results of Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey key findings in GCC, Dr Salam said that the SQUH is activating an Early Detection Centre for SCDs.
“Recent advancements in SCD research and clinical practices, including innovative treatment approaches and ongoing initiatives aimed at improving patient outcomes and quality of life, underscore the nation’s commitment to tackling sickle cell disease,' Dr Salam said.
SCD is a significant public health concern in the GCC countries, with prevalence rates ranging from 0.24 per cent to 5.8 per cent. SCD is an inherited disorder that adversely impacts the physical and emotional well-being of patients and caregivers.
Titled ‘New hope for a once neglected disease’, the round table designed to share valuable insights on patient experiences, psychosocial burdens and the impact of SCD on the quality of life of patients and caregivers was attended by leading healthcare professionals from across the region.
A quantitative SHAPE survey was conducted among SCD patients, caregivers and healthcare providers from 10 countries including the GCC, contributing to the mounting real-world evidence of the tremendous burden of SCD. Improving patient access to care, strengthening the patient–HCP relationship, and enhancing patient, caregiver and HCP knowledge are shared responsibilities among all those whose lives are impacted by SCD and those with the means to drive change.
“The findings of the SHAPE survey provide invaluable insights into experiences of individuals grappling with SCD and their caregivers. By amplifying the voices of the SCD community, we aim to drive greater awareness, understanding and action to address the unmet needs and disparities faced by those affected by this condition,” Zakareya al Khadem, Founder and Chairman of Bahrain Sickle Cell Society, said.
Among SHAPE’s key findings, fatigue, bone aches and vaso-occlusive crisis (VOC) pain emerged as prevalent symptoms significantly impacting the quality of life for both SCD patients and caregivers. The survey also highlighted SCD's profound effect on daily activities, with patients and caregivers reporting an average of 3.9 missed school or work days per month.
“Through collaboration with patient advocacy group leaders, we endeavour to raise awareness, advocate for improved quality of care and provide support to those affected by sickle cell disease,” said Dr Jaafar al Touq, Genetic Haematology Consultant at Hereditary Blood Disorder Centre, Bahrain Ministry of Health.
People with SCD have what are called a typical haemoglobin molecules — proteins that carry oxygen in red blood cells — which can cause the shape of red blood cells to be distorted. These distorted red blood cells can then clump in blood vessels and prematurely break down, causing anaemia, fatigue, swelling and severe pain enduring for days or weeks.
“We believe people living with a rare disease such as SCD, along with the untold number of family members and caregivers who support them, deserve more. For more than 30 years, we have worked hand in hand with the rare disease communities around the world to forge a pathway towards life-changing innovations,” Dr Nadine Tarcha, Pfizer's Gulf Medical Director, said.
A national registry for SCD is currently in the process and will soon be activated besides a nation-wide campaign to create awareness against this hereditary disease, according to Prof Dr Salam al Kindi, consultant haematologist at Sultan Qaboos University Hospital.
Speaking to the Observer on the sidelines of the media round table to raise awareness of SCD and share the results of Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey key findings in GCC, Dr Salam said that the SQUH is activating an Early Detection Centre for SCDs.
“Recent advancements in SCD research and clinical practices, including innovative treatment approaches and ongoing initiatives aimed at improving patient outcomes and quality of life, underscore the nation’s commitment to tackling sickle cell disease,' Dr Salam said.
SCD is a significant public health concern in the GCC countries, with prevalence rates ranging from 0.24 per cent to 5.8 per cent. SCD is an inherited disorder that adversely impacts the physical and emotional well-being of patients and caregivers.
Titled ‘New hope for a once neglected disease’, the round table designed to share valuable insights on patient experiences, psychosocial burdens and the impact of SCD on the quality of life of patients and caregivers was attended by leading healthcare professionals from across the region.
A quantitative SHAPE survey was conducted among SCD patients, caregivers and healthcare providers from 10 countries including the GCC, contributing to the mounting real-world evidence of the tremendous burden of SCD. Improving patient access to care, strengthening the patient–HCP relationship, and enhancing patient, caregiver and HCP knowledge are shared responsibilities among all those whose lives are impacted by SCD and those with the means to drive change.
“The findings of the SHAPE survey provide invaluable insights into experiences of individuals grappling with SCD and their caregivers. By amplifying the voices of the SCD community, we aim to drive greater awareness, understanding and action to address the unmet needs and disparities faced by those affected by this condition,” Zakareya al Khadem, Founder and Chairman of Bahrain Sickle Cell Society, said.
Among SHAPE’s key findings, fatigue, bone aches and vaso-occlusive crisis (VOC) pain emerged as prevalent symptoms significantly impacting the quality of life for both SCD patients and caregivers. The survey also highlighted SCD's profound effect on daily activities, with patients and caregivers reporting an average of 3.9 missed school or work days per month.
“Through collaboration with patient advocacy group leaders, we endeavour to raise awareness, advocate for improved quality of care and provide support to those affected by sickle cell disease,” said Dr Jaafar al Touq, Genetic Haematology Consultant at Hereditary Blood Disorder Centre, Bahrain Ministry of Health.
People with SCD have what are called a typical haemoglobin molecules — proteins that carry oxygen in red blood cells — which can cause the shape of red blood cells to be distorted. These distorted red blood cells can then clump in blood vessels and prematurely break down, causing anaemia, fatigue, swelling and severe pain enduring for days or weeks.
“We believe people living with a rare disease such as SCD, along with the untold number of family members and caregivers who support them, deserve more. For more than 30 years, we have worked hand in hand with the rare disease communities around the world to forge a pathway towards life-changing innovations,” Dr Nadine Tarcha, Pfizer's Gulf Medical Director, said.