Current challenges and needs

  • European strategy for screening newborns on sickle cell disease
  • Harmonized guidance for nationwide systematic screening on sickle cell disease for newborns, migrants and refugees
  • Education about sickle cell disease in Europe, for doctors, nurses and healthcare professionals to give quality care and for Transcranial Doppler scanning for stroke prevention
  • Clinical decision support tools for treating patients with sickle cell disease
  • Establishment of a network of care across Europe, where centers of expertise are linked to local hospitals
  • Mechanism for identifying and tracking patients, such as screening of migrant populations and a European registry
  • Development of tools for cross-border follow-up with patients


Things you should know about sickle cell disease

# Prevalence of sickle cell disease
Sickle cell disease is the most common inherited blood disorder in the world. It is estimated that globally more than 300.000 babies are born with sickle cell disease every year, with millions of people currently affected across the globe.

# Life expectancy
Thanks to decades of research, the median life expectancy is now, 42 years for men and 48 years for women.

# Types of sickle cell disease
The most common type of sickle cell disease are; sickle cell anemia (HbSS), sickle hemoglobin C disease (HbSC) and sickle beta thalassemia disease (HbS beta thalassemia).

# Symptoms and complications
By early childhood, patients with sickle cell disease often suffer from painful swelling of hands and feet, recurrent infections, severe and chronic pain in various parts of the body, stroke and other severe complications. Patients’ chronic anemia usually worsens during adolescence and organ damage can occur.

# Diagnoses
A simple blood test can identify whether a person is a carrier of a sickle cell gene. In the developed world, the disease is now commonly detected during routine newborn genetic screening.

# Sickle cell and family planning
Sickle cell disease is always inherited. When both parents carry a sickle cell gene but are not sick themselves, their child has a 25 percent chance of having sickle cell disease. People with sickle cell disease or trait and wishing to start a family, are advised to discuss this with their physician.

# Possible treatments
Sickle cell disease is a lifelong condition and remains a challenging disease to manage and to treat.
Patients’ life expectancy can be greatly improved by simple medical care, such as early diagnosis, education, access to hydroxyurea, antimalarial medication and antibiotics, and access to blood transfusions and hospital treatment.

# Only cure is stem cell transplant
The use of bone marrow transplant is however limited, because of the problems in finding a matching donor, and the risk and complications associated with a transplant.