Genetic counseling is important given the high risk in the children of affected parents.[15]Boot E, Óskarsdóttir S, Loo JCY, et al. Updated clinical practice recommendations for managing adults with 22q11.2 deletion syndrome. Genet Med. 2023 Mar;25(3):100344.
https://www.gimjournal.org/article/S1098-3600(22)01028-0/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/36729052?tool=bestpractice.com
[52]Óskarsdóttir S, Boot E, Crowley TB, et al. Updated clinical practice recommendations for managing children with 22q11.2 deletion syndrome. Genet Med. 2023 Mar;25(3):100338.
https://www.gimjournal.org/article/S1098-3600(22)01018-8/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/36729053?tool=bestpractice.com
Because of the sporadic nature of the disease, most healthy parents are not at risk for additional children with the disorder, but because the presentation may be mild, a careful assessment of apparently healthy parents is warranted before determining the recurrence risk. Complex congenital heart disease may be more likely in relatives of individuals with DiGeorge syndrome (22q11.2 deletion syndrome, or 22q11.2DS), regardless of whether they also have a deletion.[34]Swaby JA, Silversides CK, Bekeschus SC, et al. Complex congenital heart disease in unaffected relatives of adults with 22q11.2 deletion syndrome. Am J Cardiol. 2011;107:466-71.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3188300
http://www.ncbi.nlm.nih.gov/pubmed/21257016?tool=bestpractice.com
The asymptomatic population is generally not screened for DiGeorge syndrome. However, there is an impetus for lymphopenia screening to detect severe combined immunodeficiency as part of the normal newborn screening panel, and this has the potential to detect some patients with 22q11.2 deletion syndrome as well.[82]Martin-Nalda A, Cueto-González AM, Argudo-Ramírez A, et al. Identification of 22q11.2 deletion syndrome via newborn screening for severe combined immunodeficiency. Two years' experience in Catalonia (Spain). Mol Genet Genomic Med. 2019 Dec;7(12):e1016.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6900354
http://www.ncbi.nlm.nih.gov/pubmed/31663686?tool=bestpractice.com
[83]Liao HC, Liao CH, Kao SM, et al. Detecting 22q11.2 deletion syndrome in newborns with low T cell receptor excision circles from severe combined immunodeficiency acreening. J Pediatr. 2019 Jan;204:219-24.e1.
http://www.ncbi.nlm.nih.gov/pubmed/30268402?tool=bestpractice.com
[84]Barry JC, Crowley TB, Jyonouchi S, et al. Identification of 22q11.2 deletion syndrome via newborn screening for severe combined immunodeficiency. J Clin Immunol. 2017 Jul;37(5):476-85.
http://www.ncbi.nlm.nih.gov/pubmed/28540525?tool=bestpractice.com
This may be useful given at least 1 in 4 newborns with 22q11.2 deletion are missed clinically.[85]Agergaard P, Hebert A, Sørensen KM, et al. Can clinical assessment detect 22q11.2 deletions in patients with cardiac malformations? A review. Eur J Med Genet. 2011;54:3-8.
http://www.ncbi.nlm.nih.gov/pubmed/20965293?tool=bestpractice.com
The benefits of newborn screening for 22q11.2 deletion; however, is unclear, given the lack of research in this space; such screening would also not be able to detect DiGeorge syndrome resulting from causes other than 22q11.2 deletion.[86]Tomita-Mitchell A, Mahnke DK, Larson JM, et al. Multiplexed quantitative real-time PCR to detect 22q11.2 deletion in patients with congenital heart disease. Physiol Genomics. 2010;42A:52-60.
http://www.ncbi.nlm.nih.gov/pubmed/20551144?tool=bestpractice.com
[87]Bales AM, Zaleski CA, McPherson EW. Patient and family experiences and opinions on adding 22q11 deletion syndrome to the newborn screen. J Genet Couns. 2010;19:526-34.
http://www.ncbi.nlm.nih.gov/pubmed/20496046?tool=bestpractice.com
Testing only those with conotruncal abnormalities has only 70% sensitivity for identifying 22q11.2 deletion. Consideration should be given to screening any patient with an aortic arch abnormality.[88]Peyvandi S, Lupo PJ, Garbarini J, et al. 22q11.2 deletions in patients with conotruncal defects: data from 1,610 consecutive cases. Pediatr Cardiol. 2013;34:1687-1694.
http://www.ncbi.nlm.nih.gov/pubmed/23604262?tool=bestpractice.com
New strategies are needed for identifying those with other congenital heart diseases that would benefit from testing.[89]Agergaard P, Olesen C, Østergaard JR, et al. The prevalence of chromosome 22q11.2 deletions in 2,478 children with cardiovascular malformations: a population-based study. Am J Med Genet A. 2012;158A:498-508.
http://www.ncbi.nlm.nih.gov/pubmed/22190294?tool=bestpractice.com
There is probably little advantage to screening patients with schizophrenia who do not have other features of DiGeorge syndrome.[90]Monteiro FP, Vieira TP, Sgardioli IC, et al. Defining new guidelines for screening the 22q11.2 deletion based on a clinical and dysmorphologic evaluation of 194 individuals and review of the literature. 2013;172:927-45.
http://www.ncbi.nlm.nih.gov/pubmed/23440478?tool=bestpractice.com