Screenings if you have sickle cell disease
The NHS says people with sickle cell disease have a care plan and regular check-ups because the condition raises the risk of stroke, eye problems and damage to organs such as the lungs, heart and kidneys. (NHS) Some of those checks follow an age schedule. (ASH, 2020) (ASH, 2019) How sickle cell disease is found at birth is on newborn screening results, and what a carrier result means is on sickle cell trait test results. This page covers screening only, not treatment or medicines.
Brain blood flow: transcranial Doppler from 2 to 16
A transcranial Doppler (TCD) scan is an ultrasound that measures blood flow speed in the brain's arteries. ASH recommends a TCD scan every year for children aged 2 to 16 with HbSS or HbS beta-zero thalassemia (a strong recommendation). For children with other compound types, not HbSC, who have red cell breakdown in the same range as HbSS, it suggests TCD screening. (ASH, 2020) The NHLBI expert panel strongly recommended yearly TCD exams from ages 2 to 16 in children with sickle cell anemia. (NHLBI panel, 2014)
A one-time brain MRI
ASH says silent cerebral infarcts (small areas of brain injury without stroke symptoms) affect about 1 in 3 children and 1 in 2 adults with HbSS or HbS beta-zero thalassemia, and are linked with memory and thinking problems, school difficulties and later infarcts. It: (ASH, 2020)
- recommends at least one MRI, without sedation, in early school-age children, when an MRI can usually be done without sedation
- suggests at least one MRI, without sedation, for adults with these types
Development and memory questions
ASH recommends that clinicians caring for children with sickle cell disease ask short screening questions about developmental delay in preschool-age children and about learning or behavior concerns in school-age children, and that adults are asked short questions about memory and thinking. When answers suggest a problem, it recommends formal screening or a referral to a psychologist or a doctor who can do a fuller assessment. (ASH, 2020) See autism and developmental screening.
Urine and kidney checks from age 10
ASH quotes the NHLBI 2014 expert panel report as saying screening for albuminuria (albumin, a protein, in the urine) should happen every year starting at age 10 in people with sickle cell disease. ASH adds that more recent evidence suggests a possible benefit of earlier screening, and that, as kidney guidelines for the general population say, albuminuria should be confirmed with a first morning urine sample or 2 untimed samples in a row. (ASH, 2019) MedlinePlus lists serum creatinine and serum potassium among the tests commonly done to monitor people with sickle cell disease. (MedlinePlus) What urine albumin and eGFR results mean is on kidney test results, and checks once kidney disease is found are on screenings if you have kidney disease.
Eye exams from age 10
Sickle cell disease can damage the retina at the back of the eye. A 2025 review in Haematologica says eye screening is currently recommended for everyone with sickle cell disease by dilated eye exam every 1 or 2 years, starting at age 10, while the best interval for each person is not well defined. (Haematologica, 2025) The NHLBI expert panel strongly recommended referral to eye specialists for children and adults with proliferative sickle cell retinopathy. (NHLBI panel, 2014) MedlinePlus lists poor eyesight or blindness among the possible complications. (MedlinePlus) What happens at the visit is on eye exam: what to expect, and the usual schedule is on eye exams by age.
Heart, lung and sleep tests
For children and adults with sickle cell disease who have no symptoms, ASH suggests against routine screening with: (ASH, 2019)
- an echocardiogram (heart ultrasound) to look for pulmonary hypertension
- lung function tests
- an overnight sleep study
Instead, ASH says it is good practice to take a regular, focused history. Shortness of breath or low oxygen that is unexplained or worse than before may call for an echocardiogram, and snoring, pauses in breathing during sleep, poor sleep or daytime sleepiness, or early morning headaches may call for a sleep study. It names questionnaires such as the Epworth Sleepiness Scale to help decide who needs one. (ASH, 2019) The NHLBI expert panel strongly recommended an echocardiogram to look into signs of pulmonary hypertension. (NHLBI panel, 2014) MedlinePlus lists blood oxygen saturation and a complete blood count among the tests commonly used to monitor sickle cell disease. (MedlinePlus)
ASH notes that people with HbSS tend to have lower blood pressure than people of the same age and sex without sickle cell disease. (ASH, 2019) See child blood pressure check and blood pressure readings: what they mean.
Pregnancy, newborn and carrier screening
The NHS says sickle cell disease is usually found during pregnancy or shortly after birth through its pregnancy and newborn screening programs, and that anyone can ask for a blood test to find out if they are a carrier. (NHS) See genetic carrier screening, sickle cell trait test results and newborn screening results.
When to contact a provider
MedlinePlus, sickle cell disease, when to contact a medical professional: (MedlinePlus)
Contact your health care provider if you have:
- Any symptoms of infection (fever, body aches, headache, fatigue)
- Pain crises
- Painful and long-term erection (in men)
Where they differ:
- Who gets TCD scans. The NHLBI panel's yearly TCD recommendation is for children with sickle cell anemia, (NHLBI panel, 2014) while ASH also suggests TCD for children with other compound types, not HbSC, who have a similar level of red cell breakdown. (ASH, 2020)
- Urine albumin start age. The NHLBI 2014 report says yearly from age 10; ASH notes newer evidence that earlier screening may help. (ASH, 2019)
- Eye exam interval. Current advice is a dilated eye exam every 1 or 2 years from age 10; the 2025 Haematologica review authors propose yearly exams for people at higher risk and every 3 years for people at lower risk, and say more research is needed. (Haematologica, 2025)
Your doctor decides what your result means for you.
Questions people ask
How often do children with sickle cell disease have a transcranial Doppler scan?
ASH recommends a transcranial Doppler (TCD) scan every year from age 2 to 16 for children with HbSS or HbS beta-zero thalassemia, and the NHLBI expert panel made the same strong recommendation for children with sickle cell anemia. ASH also suggests TCD screening for children with other compound types, not HbSC, who have a similar level of red cell breakdown. (ASH, 2020) (NHLBI panel, 2014)
Is a brain MRI part of sickle cell screening?
ASH recommends at least one MRI without sedation in early school-age children with HbSS or HbS beta-zero thalassemia to look for silent cerebral infarcts, and suggests at least one MRI without sedation for adults with these types. (ASH, 2020)
When do urine checks for kidney damage start?
ASH quotes the NHLBI 2014 expert panel report as saying screening for albuminuria (protein in the urine) should happen every year starting at age 10, and notes that more recent evidence suggests a possible benefit of earlier screening. (ASH, 2019)
How often are eye exams done with sickle cell disease?
A 2025 review in Haematologica says eye screening is currently recommended for everyone with sickle cell disease by a dilated eye exam every 1 or 2 years starting at age 10, while noting that the best interval for each person is not well defined. (Haematologica, 2025)
Is a heart ultrasound done every year?
ASH suggests against a routine screening echocardiogram for children and adults with sickle cell disease who have no symptoms, and says it is good practice to ask regularly about signs and symptoms that could point to a need for one. (ASH, 2019)