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Which investigations are recommended for monitoring renal involvement in patients with Tuberous Sclerosis Complex?

Answer

Guideline-Aligned (High Confidence)
Generated by iatroX. Developer: Dr Kola Tytler MBBS CertHE MBA MRCGP (General Practitioner).
Last reviewed: 22 August 2025

The provided UK guideline excerpts do not specifically detail investigations recommended for monitoring renal involvement in patients with Tuberous Sclerosis Complex. However, general recommendations for monitoring renal involvement and chronic kidney disease (CKD) are outlined, which would be applicable if a patient with Tuberous Sclerosis Complex develops these conditions.

For monitoring CKD, the frequency of monitoring estimated glomerular filtration rate (eGFRcreatinine) and albumin creatinine ratio (ACR) should be agreed upon with the patient 2. These measurements help indicate the risk of adverse outcomes such as CKD progression, acute kidney injury, and cardiovascular events 2.

A renal ultrasound scan should be offered to adults with CKD who have accelerated progression of CKD, visible or persistent invisible haematuria, symptoms of urinary tract obstruction, a family history of polycystic kidney disease (if over 20), or a GFR of less than 30 ml/min/1.73 m2 (GFR category G4 or G5) 2. Renal imaging is also used to investigate symptoms that suggest upper urinary tract disease 3. It is important to note that renal scintigraphy should not be used for routine surveillance in people with neurogenic lower urinary tract dysfunction 3.

For babies and children with urinary tract infections (UTIs), specific imaging schedules are recommended depending on age and the nature of the UTI 1. For instance, ultrasound during acute infection is recommended for atypical or recurrent UTIs in babies and children 1. A dimercaptosuccinic acid (DMSA) scintigraphy scan may be used 4 to 6 months after an acute infection to detect renal parenchymal defects, particularly in cases of atypical or recurrent UTIs in babies and children 1. Micturating cystourethrogram (MCUG) may be considered in specific circumstances, such as in babies younger than 6 months with atypical or recurrent UTI, or if there is dilatation on ultrasound, poor urine flow, non-E. coli infection, or a family history of VUR 1.

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