COVID-19 is an emerging, rapidly evolving situation.
Get the latest public health information from CDC:

Get the latest research information from NIH: Menu

Barriers to Care and QOL for CCCA Patients

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT03044782
Recruitment Status : Completed
First Posted : February 7, 2017
Last Update Posted : December 13, 2017
Information provided by (Responsible Party):
Roopal Kundu, Northwestern University

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.

Condition or disease Intervention/treatment
Scarring Alopecia Central Centrifugal Cicatricial Alopecia Central Centrifugal Scarring Alopecia Other: 53-Item Survey

Layout table for study information
Study Type : Observational [Patient Registry]
Actual Enrollment : 34 participants
Observational Model: Case-Only
Time Perspective: Cross-Sectional
Target Follow-Up Duration: 1 Year
Official Title: Barriers to Healthcare and Quality of Life for Central Centrifugal Cicatricial Alopecia Patients
Actual Study Start Date : August 2016
Actual Primary Completion Date : September 2017
Actual Study Completion Date : September 2017

Primary Outcome Measures :
  1. Quantified Barriers to Care Survey Responses [ Time Frame: Duration of study-approximately 2 years ]
  2. Quantified Quality of Life Survey Responses [ Time Frame: Duration of study-approximately 2 years ]

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

Layout table for eligibility information
Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
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.

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)

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT03044782

Layout table for location information
United States, Illinois
Northwestern University Department of Dermatology
Chicago, Illinois, United States, 60611
Sponsors and Collaborators
Northwestern University
Layout table for investigator information
Principal Investigator: Roopal Kundu, MD Northwestern Department of Dermatology

Additional Information:

Publications of Results:

Layout table for additonal information
Responsible Party: Roopal Kundu, Assistant Professor, Dermatology, Northwestern University Identifier: NCT03044782    
Other Study ID Numbers: SP070316
First Posted: February 7, 2017    Key Record Dates
Last Update Posted: December 13, 2017
Last Verified: December 2017
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: Undecided
Additional relevant MeSH terms:
Layout table for MeSH terms
Alopecia Areata
Hair Diseases
Skin Diseases
Pathological Conditions, Anatomical
Pathologic Processes