Research Study: Communication and testing experiences of adolescent girls and adult women in families with X-linked adrenoleukodystrophy
Purpose of Research: Genetic counselors are often involved in facilitating genetic testing for both a patient and their biological relatives. While testing in some circumstances is considered routine and consistent with the standard of care in the field, other circumstances involve more morally ambiguous circumstances with limited guidance and unclear standards within the genetic counseling profession. One such circumstance involves genetic testing for minors (children and adolescents). This study seeks to study the experience of girls and adolescents in families with X-ALD to better inform medical care and support needs for people and families with X-ALD in the future.
Eligibility: To be eligible for this study, you must be a girl or woman living in the United States between 14 and 25 years of age with:
- A family history of X-ALD
- A diagnosis of X-ALD (previously called being a carrier of X-ALD)
- A chance of having X-ALD (previously called being a carrier of X-ALD)
The survey is here: https://umn.qualtrics.com/jfe/form/SV_1MtlWxvkNowEYpU