Long term outcomes and quality of life in PHACE syndrome
A
Anita Haggstrom, MD
Primary Investigator
Enrolling By Invitation
10-100 years
All
Phase
N/A
100 participants needed
2 Locations
Brief description of study
In this study, we will investigate outcomes,
symptoms, and their impact on quality of life in adolescents and adults with
PHACE syndrome in ages 10 years and up. This study will be the largest
investigation into long term outcomes of PHACE and the first to capture the
experiences of adolescents with this disease.
Detailed description of study
In this study, we
will collect data on symptoms, outcomes, and quality of life (QoL) in patients
≥10 years old with PHACE to better understand the natural history and long-term
outcomes of the disease. We will investigate overall health (comorbid
diagnoses, hearing, endocrine, dental, social/emotional, and
gynecologic/fertility in patients >18 years old) as well as signs and
symptoms captured in the PHACE acronym.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: PHACE
-
Age: Between 10 Years - 100 Years
-
Gender: All
Inclusion Criteria:
- 1. Age >10 years2. Diagnosis of definite PHACE, as established in the 2016 Consensus Guidelines.
Exclusion Criteria:
- 1. Age < 10 years2. Diagnosis of possible PHACE or facial hemangioma without PHACE diagnosis
Updated on
01 Aug 2024.
Study ID: DERM-UCSF-PHACE; 12531
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