Table 6.

Recommended Surveillance for Individuals with Tatton-Brown-Rahman Syndrome

System/ConcernEvaluationFrequency
Constitutional Measurement of growth parameters incl head circumference in infancy & childhoodAt each visit
Development Monitor developmental progress & educational needs.
Psychiatric/
Behavioral 		Behavior assessment for anxiety, attention, & aggressive or self-injurious behavior
Neurologic
  • Monitor those w/seizures as clinically indicated.
  • Assess for new manifestations such as seizures & changes in tone.
Musculoskeletal Physical medicine, OT/PT assessment of mobility & self-help skills
Respiratory Assess for signs & symptoms of sleep apnea.
Hematologic/
Lymphatic 		Assess for signs & symptoms of hematologic malignancy, w/low threshold for CBC w/differential & further investigations if clinically indicated.
Family/
Community 		Assess family need for social work support (e.g., palliative/respite care, home nursing, other local resources) & care coordination.
Cardiovascular Echocardiogram to assess aortic root indicesOngoing surveillance to be determined by size of aortic root, advice of cardiologist, health care framework, & data from longitudinal studies

CBC = complete blood count; OT = occupational therapy; PT = physical therapy

From: Tatton-Brown-Rahman Syndrome

Cover of GeneReviews®
GeneReviews® [Internet].
Adam MP, Feldman J, Mirzaa GM, et al., editors.
Seattle (WA): University of Washington, Seattle; 1993-2024.
Copyright © 1993-2024, University of Washington, Seattle. GeneReviews is a registered trademark of the University of Washington, Seattle. All rights reserved.

GeneReviews® chapters are owned by the University of Washington. Permission is hereby granted to reproduce, distribute, and translate copies of content materials for noncommercial research purposes only, provided that (i) credit for source (http://www.genereviews.org/) and copyright (© 1993-2024 University of Washington) are included with each copy; (ii) a link to the original material is provided whenever the material is published elsewhere on the Web; and (iii) reproducers, distributors, and/or translators comply with the GeneReviews® Copyright Notice and Usage Disclaimer. No further modifications are allowed. For clarity, excerpts of GeneReviews chapters for use in lab reports and clinic notes are a permitted use.

For more information, see the GeneReviews® Copyright Notice and Usage Disclaimer.

For questions regarding permissions or whether a specified use is allowed, contact: ude.wu@tssamda.

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.