Barriers to Care and QOL for CCCA Patients

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

34 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-08-31

Study Completion Date

2017-09-30

Brief Summary

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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.

Detailed Description

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Conditions

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Scarring Alopecia Central Centrifugal Cicatricial Alopecia Central Centrifugal Scarring Alopecia

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

CROSS_SECTIONAL

Interventions

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53-Item Survey

Intervention Type OTHER

Eligibility Criteria

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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)

Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Responsible Party

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Roopal Kundu

Assistant Professor, Dermatology

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Roopal Kundu, MD

Role: PRINCIPAL_INVESTIGATOR

Northwestern Department of Dermatology

Locations

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Northwestern University Department of Dermatology

Chicago, Illinois, United States

Site Status

Countries

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United States

References

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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.

Reference Type RESULT

PMID: 23210944 (View on PubMed)

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.

Reference Type RESULT

PMID: 19293007 (View on PubMed)

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

Reference Type RESULT

PMID: 25276273 (View on PubMed)

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.

Reference Type RESULT

PMID: 6226496 (View on PubMed)

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.

Reference Type RESULT

PMID: 24571594 (View on PubMed)

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.

Reference Type RESULT

PMID: 22097988 (View on PubMed)

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.

Reference Type RESULT

PMID: 21482861 (View on PubMed)

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

Reference Type RESULT

PMID: 5673883 (View on PubMed)

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.

Reference Type RESULT

PMID: 24680004 (View on PubMed)

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.

Reference Type RESULT

PMID: 12789165 (View on PubMed)

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.

Reference Type RESULT

PMID: 16616302 (View on PubMed)

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.

Reference Type RESULT

PMID: 1739290 (View on PubMed)

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.

Reference Type RESULT

PMID: 10677100 (View on PubMed)

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.

Reference Type RESULT

PMID: 19909522 (View on PubMed)

Other Identifiers

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SP070316

Identifier Type: -

Identifier Source: org_study_id

Barriers to Care and QOL for CCCA Patients

Study Results

Basic Information

Brief Summary

Detailed Description

Conditions

Study Design

Interventions

53-Item Survey

Eligibility Criteria

Inclusion Criteria

Exclusion Criteria

Sponsors

Northwestern University

Responsible Party

Roopal Kundu

Principal Investigators

Roopal Kundu, MD

Locations

Northwestern University Department of Dermatology

Countries

References

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.

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.

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

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

Other Identifiers

SP070316