Clinical trial NCT03044782: Barriers to Care and QOL for CCCA Patients
Official title: Barriers to Healthcare and Quality of Life for Central Centrifugal Cicatricial Alopecia Patients
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Scarring Alopecia
Central Centrifugal Cicatricial Alopecia
Central Centrifugal Scarring Alopecia
Lead sponsor: Northwestern University
Sponsor class: OTHER
First posted: 2017-02-07
Enrollment: 34
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: CASE_ONLY
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Women diagnosed with CCCA who have been seen at Northwestern Dermatology between 10/1/15 and 9/30/17.

Brief summary: The purpose of the current project is twofold; first to determine what personal, historical, logistical, and environmental factors preclude women from obtaining medical care for CCCA hair loss. Because damage from CCCA is irreversible, early identification and treatment is paramount to limiting the negative ramifications of the disease. Second, to investigate how CCCA hair loss, a common occurrence in the Black population, can be a significant psychological impediment to lives of affected Black women. Based on previous research on the psychosocial impact of generalized hair loss in Black women, it is fair to consider that CCCA hair loss also leads to problems with self-esteem and participation in daily life activities. This research, the first of its kind, will add to existing knowledge of CCCA by investigating the quality of life and barriers to care of patients with this condition. The goal of this study is to illuminate what stands in the way of secondary and tertiary prevention of CCCA patients and tailor treatment strategies to address their needs. The results of this study will be instrumental in modifying dermatology resident training, adding to existing dermatology management guidelines, and even developing public health advocacy programming.


Eligibility criteria: Inclusion Criteria:

* Evaluated in the Northwestern Dermatology Department between October 1, 2015 and September 30, 2017.
* Evaluated by any faculty physician.
* Diagnosed with CCCA.
* Age 18 or older.
* All subjects must have given signed informed consent prior to participation in study.

Exclusion Criteria:

* Non-English speakers (interpreters not available)

Primary outcomes:
measure: Quantified Barriers to Care Survey Responses
timeFrame: Duration of study-approximately 2 years
measure: Quantified Quality of Life Survey Responses
timeFrame: Duration of study-approximately 2 years
Secondary outcomes:
Other outcomes:
Locations:
city: Chicago
country: United States
facility: Northwestern University Department of Dermatology
state: Illinois
Study officials:
affiliation: Northwestern Department of Dermatology
name: Roopal Kundu, MD
role: PRINCIPAL_INVESTIGATOR
References:
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