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Non–age-specific symptoms

Some symptoms of excess androgen are common in
children and adults

Acne and hirsutism are common in adults and children with CAH. In different studies, many pediatric and adult patients experienced acne, while a majority of female patients reported unwanted hair growth.1,2

~38%
of pediatric patients
21%
of adult patients

had acnein a recent CAH study
(pediatric, n=55; adult, n=53)1

56%

of female patients

reported a prior history of hirsutismin a study of adults and children with CAH (n=82)2*

In studies that evaluated patients without CAH, both acne and hirsutism had a negative impact on mental health3-5†

*For reference, hirsutism affects ~10% of the female population in the US.

†Studies were not specific to CAH.

Adrenal rest tumors are linked to
elevated ACTH

TARTs are common in male patients and may be underdiagnosed6-8‡§

25%
of pediatric CAH patients have TARTs
46%
of adult CAH patients have TARTs

OARTs are less common but can affect female patients across a range of ages.9

Ways to manage TARTs6

1. Monitor

beginning in adolescence

2. Discuss

infertility and fertility preservation

3. Treat

TARTs promptly to maintain fertility

An approach to improve fertility
Reduce ACTH, reduce TART size, and restore testicular function infographic

>50% of male CAH patients/caregivers said they never discussed TARTs with their HCPs in a recent survey (n=123)10

‡Prevalence based on a meta-analysis that included 441 pediatric male patients and 642 adult male patients.6

§Underdiagnosis is based on recent clinical trials in pediatric and adult patients with CAH. TARTs were reported in 6% and 48% of pediatric and adult male participants, respectively, but were identified in 33% and 66% who underwent baseline ultrasonography.7,8

ACTH=adrenocorticotropic hormone; OART=ovarian adrenal rest tumor; TART=testicular adrenal rest tumor.

Learn how glucocorticoids are used to treat CAH11

Role of GCs in CAH

Explore a way to directly target ACTH and androgen excess11

Learn about the CRF pathway

REFERENCES

  1. White PC, Sen GP, Tang F, et al. Natural history of classic congenital adrenal hyperplasia: results from pediatric and adult patients in the CAHtalog Registry. Poster presented at: The Endocrine Society Annual Meeting; June 1-4, 2024; Boston, MA.
  2. Finkielstain GP, Kim MS, Sinaii N, et al. Clinical characteristics of a cohort of 244 patients with congenital adrenal hyperplasia. J Clin Endocrinol Metab. 2012;97(12):4429-4438. doi:10.1210/jc.2012-2102
  3. Pate C. Issues faced by women with hirsutism: state of the science. Health Care Women Int. 2016;37(6):636-645. doi:10.1080/07399332.2015.1078805
  4. Lipton MG, Sherr L, Elford J, Rustin MHA, Clayton WJ. Women living with facial hair: the psychological and behavioral burden. J Psychosom Res. 2006;61(2):161-168. doi:10.1016/j.jpsychores.2006.01.016
  5. Stamu-O'Brien C, Jafferany M, Carniciu S, Abdelmaksoud A. Psychodermatology of acne: psychological aspects and effects of acne vulgaris. J Cosmet Dermatol. 2020;20(4):1080-1083. doi:10.1111/jocd.13765
  6. Engels M, Span PN, van Herwaarden AE, et al. Testicular adrenal rest tumors: current insights on prevalence, characteristics, origin, and treatment. Endocr Rev. 2019;40(4):973-987. doi:10.1210/er.2018-00258
  7. Auchus RJ, Hamidi O, Pivonello R, et al. Phase 3 trial of crinecerfont in adult congenital adrenal hyperplasia. N Engl J Med. 2024;391(6):504-514. doi:10.1056/NEJMoa2404656
  8. Sarafoglou K, Kim MS, Lodish M, et al. Phase 3 trial of crinecerfont in pediatric congenital adrenal hyperplasia. N Engl J Med. Published online June 2, 2024. doi:10.1056/NEJMoa2404655
  9. Koren R, Koren S, Khashper A, Benbassat C, Pekar-Zlotin M, Vaknin Z. Ovarian adrenal rest tumor in congenital adrenal hyperplasia: is medical treatment the first line option? Arch Endocrinol Metab. 2021;65(6):841-884. doi:10.20945/2359-3997000000415
  10. Nebesio TD, Kim MS, Szymanski KM, et al. Patient and parent perspectives on testicular adrenal rest tumors in congenital adrenal hyperplasia. Horm Res Pediatr. 2023;96(5):518-522. doi:10.1159/000529211
  11. Mallappa A, Merke DP. Management challenges and therapeutic advances in congenital adrenal hyperplasia. Nat Rev Endocrinol. 2022;18(6):337-352. doi:10.1038/s41574-022-00655-w