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Clinical Trials & Research Studies

Clinical trials are research studies that investigate new or experimental treatments in patients living with a specific disease such cicatricial alopecia. These studies are important because they contribute to the overall knowledge and progress of the understanding of cicatricial alopecia as well as playing an instrumental role in the development and U.S. FDA (Food and Drug Administration) approval of new therapies. People who are willing to participate in clinical trials and research studies can benefit personally while helping all cicatricial alopecia patients and potentially furthering important cicatricial alopecia research.

A Research Study to Evaluate Frontal Fibrosing Alopecia

Posted: June 4th, 2015

Frontal fibrosing alopecia (FFA) is a type of scarring or permanent hair loss that was first described in 1994. It typically occurs in post-menopausal women of European descent but has been reported in men, premenopausal women and other races and ethnicities. It typically involves recession of the frontal hair line, redness of the involved scalp, and eyebrow loss. There is no known cause and no established treatment.

A multicenter, data collection research study is now going on at 9 different sites across the U.S. If you, or your dermatologist, feels that you may have this condition, please either contact one of the sites directly or ask your dermatologist to contact the site on your behalf. The study doctors first request that you be seen in their clinics for a routine visit for hair loss and then if your diagnosis is confirmed to be FFA, you would be consented to participate in the study. The study would allow the study doctors to collect further information on your hair loss condition and for you to fill out an online questionnaire that may help to lead to information about what is causing this disorder. There is no treatment or compensation related to the study.

If you are interested in participating in this study, please contact or have your dermatologist contact one of the following sites closest to your home. The sites will set up an appointment for you to see the study doctor.

Callender Center for Clinical Research
Glenn Dale, Maryland
Investigator: Valerie Callender, MD
Contact: FTitanwa@CallenderSkin.com or 301-352-1520

Cleveland Clinic
Cleveland, Ohio
Investigator: Wilma Bergfeld, MD
Contact: 216-444-5722 or 216-445-9110

The (Kaiser) Permanente Group
Vallejo, California
Investigator: Paradi Mirmirani, MD
Contact: 707-651-2552

Northwest Dermatology and Research Center
Portland, Oregon
Investigator: Janet Roberts, MD
Contact: 503-223-1933

University of Miami
Miami, Florida
Investigator: Antonella Tosti, MD
Contact: CKittles@med.miami.edu

University of Minnesota
Minneapolis, Minnesota
Investigator: Maria Hordinsky, MD
Contact: 612-624-5721

University of Pennsylvania
Philadelphia, Pennsylvania
Investigator: George Cotsarelis, MD
Contact: 215-662-2737

Wake Forest University
Winston-Salem, North Carolina
Investigator: Amy McMichael, MD
Contact: amcmicha@wake.health.edu

Frontal Fibrosing Alopecia Study – UK Participants

Posted: May 7th, 2015

Dr Christos Tziotzios, an academic specialist registrar in Dermatology, is working with John McGrath, Professor of Molecular Dermatology, Michael Simpson, Professor of Genomic Medicine and Dr David Fenton, Consultant Dermatologist and Expert in Hair Disorders, at St John's Institute of Dermatology in London on genetic aspects of frontal fibrosing alopecia (FFA).

The team of researchers are collecting DNA samples from individuals affected by FFA and would be delighted to see you in their Research Clinic, which takes place at Guy's Hospital in London. A number of clinicians in other UK cities and towns are registered collaborators and it may be possible for you to be seen locally. The research appointment involves taking a blood sample for extracting your genetic material (DNA) and a focused clinical history and lasts 20-30 minutes on average. The research study is supported by a Fellowship award to Dr Tziotzios by the National Institute for Health Research (NIHR), has been ethically approved and adheres to Good Clinical Practice guidelines. The aim is to understand the genetic basis of this distressing condition with the hope to better direct future treatments. To participate in the research or for any questions or clarification please email christos.tziotzios@kcl.ac.uk.

Topical Gabapentin Study

Posted: March 17, 2015

Do you have pain, burning, or itching associated with scarring alopecia?

The Department of Dermatology at the University of Minnesota, Twin Cities is currently recruiting participants for a clinical trial to assess the efficacy of a topical Gabapentin 6% solution at treating the discomfort associated with scarring alopecia. Study entails applying a topical solution to the affected scalp twice daily over the course of 12 weeks. Biopsies and blood work will be used to assess effectiveness along with questionnaires and photographs. You will be compensated $25 for each skin biopsy that is taken, and the study drug will be provided to you free of charge.

If you are over the age of 18 and interested in participating, please, contact the Dermatology Department at derm@umn.edu or 1-612-624-5721 for further information.

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CARF is the world's only voice for patients with cicatricial alopecia and we need your support. Please donate to CARF to support patients around the world impacted by scarring, inflammatory, permanent hair loss.

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