Quality of Life in Women with X-linked Adrenoleukodystrophy
Launched by LEIPZIG UNIVERSITY MEDICAL CENTER · Dec 17, 2020
Trial Information
Current as of July 01, 2025
Recruiting
Keywords
ClinConnect Summary
This clinical trial is studying the impact of X-linked adrenoleukodystrophy (X-ALD) on the quality of life for women who carry the gene for this condition. X-ALD is a rare genetic disorder that can lead to serious problems in the brain and spinal cord, and many women who are carriers experience symptoms related to a milder form of the disease known as adrenomyeloneuropathy (AMN). The researchers aim to find out how common these symptoms are in female carriers and how they affect daily activities, work, social life, sleep, mood, and intimacy.
To participate, women must be at least 18 years old and have a confirmed diagnosis of X-ALD, either through specific fatty acids in their blood or a genetic test showing a mutation in the ABCD1 gene. Participants will complete online questionnaires available in multiple languages to share their experiences. The trial is currently recruiting participants, and it's important to note that pregnant women cannot join. This study could provide valuable insights into the challenges faced by women living with X-ALD.
Gender
FEMALE
Eligibility criteria
- Inclusion Criteria:
- • Informed consent obtained from the participant
- • Females ≥18 years at the time of consent, with proven X-ALD as defined by
- • 1. Elevated VLCFA values, or
- • 2. Mutation in ABCD1 gene
- Exclusion Criteria:
- • No informed consent and assent
- • Current pregnancy
About Leipzig University Medical Center
Leipzig University Medical Center is a leading academic institution dedicated to advancing medical research and improving patient care through innovative clinical trials. With a strong emphasis on interdisciplinary collaboration, the center combines cutting-edge scientific research with practical clinical applications, fostering an environment that supports the development of new therapies and treatment protocols. Committed to ethical standards and patient safety, Leipzig University Medical Center plays a vital role in the healthcare community by conducting rigorous clinical studies that contribute to the understanding and management of various health conditions.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Leipzig, Saxony, Germany
Patients applied
Trial Officials
Wolfgang Köhler, MD
Principal Investigator
Leipzig University Medical Center, Leukodystrophy Outpatient Clinic, Department of Neurology, Leipzig, Germany
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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