Barriers to Care and QOL for CCCA Patients

NCT03044782 | Completed

• 1 other identifier: SP070316
• Study Type: observational
• Target: 34
• Locations: 1 country
• Sites: 1

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.

Conditions

Scarring Alopecia; Central Centrifugal Cicatricial Alopecia; Central Centrifugal Scarring Alopecia

Outcome Measures

Primary Outcomes (2)

• Quantified Barriers to Care Survey Responses

  Duration of study-approximately 2 years

• Quantified Quality of Life Survey Responses

  Duration of study-approximately 2 years

Interventions

53-Item Survey OTHER

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• 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.

You may qualify if:

• 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.

You may not qualify if:

• Non-English speakers (interpreters not available)

Sponsors & Collaborators

• Northwestern University: lead

Study Sites (1)

Northwestern University Department of Dermatology

Chicago, Illinois, 60611, United States

Location

Related Publications (14)

• Dlova NC, Forder M. Central centrifugal cicatricial alopecia: possible familial aetiology in two African families from South Africa. Int J Dermatol. 2012 Nov;51 Suppl 1:17-20, 20-3. doi: 10.1111/j.1365-4632.2012.05557.x. No abstract available. English, French.

  PMID: 23210944 RESULT

• Gathers RC, Jankowski M, Eide M, Lim HW. Hair grooming practices and central centrifugal cicatricial alopecia. J Am Acad Dermatol. 2009 Apr;60(4):574-8. doi: 10.1016/j.jaad.2008.10.064.

  PMID: 19293007 RESULT

• Gathers RC, Mahan MG. African american women, hair care, and health barriers. J Clin Aesthet Dermatol. 2014 Sep;7(9):26-9.

  PMID: 25276273 RESULT

• Halder RM, Grimes PE, McLaurin CI, Kress MA, Kenney JA Jr. Incidence of common dermatoses in a predominantly black dermatologic practice. Cutis. 1983 Oct;32(4):388, 390.

  PMID: 6226496 RESULT

• Mkentane K, Maneli M, Khumalo NP, Davids LM, Freedom G. Relaxers damage hair and increase fragility. Int J Dermatol. 2014 Mar;53(3):e200-2. doi: 10.1111/ijd.12283. No abstract available.

  PMID: 24571594 RESULT

• Summers P, Kyei A, Bergfeld W. Central centrifugal cicatricial alopecia - an approach to diagnosis and management. Int J Dermatol. 2011 Dec;50(12):1457-64. doi: 10.1111/j.1365-4632.2011.05098.x.

  PMID: 22097988 RESULT

• Kyei A, Bergfeld WF, Piliang M, Summers P. Medical and environmental risk factors for the development of central centrifugal cicatricial alopecia: a population study. Arch Dermatol. 2011 Aug;147(8):909-14. doi: 10.1001/archdermatol.2011.66. Epub 2011 Apr 11.

  PMID: 21482861 RESULT

• LoPresti P, Papa CM, Kligman AM. Hot comb alopecia. Arch Dermatol. 1968 Sep;98(3):234-8. No abstract available.

  PMID: 5673883 RESULT

• Ogunleye TA, McMichael A, Olsen EA. Central centrifugal cicatricial alopecia: what has been achieved, current clues for future research. Dermatol Clin. 2014 Apr;32(2):173-81. doi: 10.1016/j.det.2013.12.005. Epub 2014 Jan 22.

  PMID: 24680004 RESULT

• McMichael AJ. Ethnic hair update: past and present. J Am Acad Dermatol. 2003 Jun;48(6 Suppl):S127-33. doi: 10.1067/mjd.2003.278.

  PMID: 12789165 RESULT

• Sperling LC, Cowper SE. The histopathology of primary cicatricial alopecia. Semin Cutan Med Surg. 2006 Mar;25(1):41-50. doi: 10.1016/j.sder.2006.01.006.

  PMID: 16616302 RESULT

• Sperling LC, Sau P. The follicular degeneration syndrome in black patients. 'Hot comb alopecia' revisited and revised. Arch Dermatol. 1992 Jan;128(1):68-74.

  PMID: 1739290 RESULT

• Sperling LC, Solomon AR, Whiting DA. A new look at scarring alopecia. Arch Dermatol. 2000 Feb;136(2):235-42. doi: 10.1001/archderm.136.2.235. No abstract available.

  PMID: 10677100 RESULT

• Mukherjee N, Morrell DS, Duvic M, Stewart PW, Goldsmith LA. Attitudes of dermatologists in the southeastern United States regarding treatment of alopecia areata: a cross-sectional survey study. BMC Dermatol. 2009 Nov 12;9:11. doi: 10.1186/1471-5945-9-11.

  PMID: 19909522 RESULT

MeSH Terms

Conditions

Alopecia

Condition Hierarchy (Ancestors)

Hypotrichosis; Hair Diseases; Skin Diseases; Skin and Connective Tissue Diseases; Pathological Conditions, Anatomical; Pathological Conditions, Signs and Symptoms

Study Officials

• Roopal Kundu, MD

  Northwestern Department of Dermatology

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: CROSS SECTIONAL
• Target Duration: 1 Year
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor, Dermatology

Study Record Dates

• First Submitted: December 16, 2016
• First Posted: February 7, 2017
• Study Start: August 1, 2016
• Primary Completion: September 1, 2017
• Study Completion: September 1, 2017
• Last Updated: December 13, 2017

Record last verified: 2017-12

Locations

US (1)