Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex.

@article{Szymaski2020MajorityOF,
  title={Majority of females with a life-long experience of CAH and parents do not consider females with CAH to be intersex.},
  author={Konrad M. Szymański and Richard C. Rink and Benjamin M. Whittam and Devon J. Hensel},
  journal={Journal of pediatric urology},
  year={2020}
}
4 Citations

Tables from this paper

What Do Patients and Parents Say About Parents' Ability to Choose Early Genital Surgery for Girls with CAH?
Puropose:To determine opinions of CAH females, and parents, about parent's ability to choose early genital surgery for CAH girls. METHODS Online survey of CAH females (46XX,16+ years old) and
Surgical Practice in Girls with Congenital Adrenal Hyperplasia: An International Registry Study
TLDR
This large international study provides a snapshot of current practice and reveals geographical and temporal differences and a logistic regression model for the probability of surgery before the second birthday (early surgery) over time identified an increase of probability for early vaginal surgery over time.
Satisfaction and Shared Decision Making in a Multidisciplinary Care Clinic for Patients with Differences in Sex Development
TLDR
Despite the complex treatment associated with differences of sex development, families are very satisfied with the quality of care they receive in a multidisciplinary setting and appear to feel personally invested in the decision making process.

References

SHOWING 1-10 OF 20 REFERENCES
Congenital adrenal hyperplasia patient perception of ‘disorders of sex development’ nomenclature
TLDR
The results indicate that the majority of parents and patients with CAH are dissatisfied with the term DSD, and reconsideration of the current nomenclature and ongoing dialogue between the medical community and patients will eventually lead to removal of stigmatization, better management protocols, and improved outcomes.
Consensus Statement on Management of Intersex Disorders
TLDR
The Lawson Wilkins Paediatric Endocrine Society (LWPES) and the EPE considered it timely to review the management of intersex disorders from a broad perspective, to review data on longer term outcome and to formulate proposals for future studies.
An Evidence-Based Model of Multidisciplinary Care for Patients and Families Affected by Classical Congenital Adrenal Hyperplasia due to 21-Hydroxylase Deficiency
TLDR
The 2002 consensus statement recommendations for the management of classical congenital adrenal hyperplasia due to 21-hydroxylase deficiency are interpreted and translated into medical, surgical and mental health protocols and preliminary evidence that such protocols result in improved care and support for patients and families is provided.
Listening through seeing: Using design methods to learn about the health perceptions of Garden on the Go® customers
TLDR
Previous research conducted with Garden on the Go® is built upon to enhance the effectiveness of this intervention and provide valuable information that other groups may use to improve the impact of their efforts in meeting the health needs of similar communities.
The SAGE Handbook of Qualitative Research in Psychology
PART ONE: METHODS Ethnography - Christine Griffin & Andrew Bengry-Howell Action Research - Carolyn Kagan, Mark Burton & Asiya Siddiquee Conversation Analysis - Celia Kitzinger & Sue Wilkinson
Detecting, Preventing, and Responding to “Fraudsters” in Internet Research: Ethics and Tradeoffs
TLDR
Online Internet research can provide investigators with large sample sizes and is cost efficient, but increasing and recurring instances of fraudulent activity among subjects raise challenges for researchers and Institutional Review Boards (IRBs).
...
...