SHAPING THE FUTURE TO ACCELERATE RESEARCH

There are countless numbers of underserved patients suffering with permanent, inflammatory hair loss with limited clinical options for treatment. There is not a single approved treatment for scarring alopecia. These two studies are necessary to bring the much-needed attention to scarring alopecia and accelerate research into finding the cause, better treatments, and a cure.

Determining the prevalence of just how many patients are affected with scarring alopecia today.

Identifying and publishing the burden of disease and unmet needs of patients with scarring alopecia.

CAP Study stands for Cicatricial Alopecia Prevalence Study. There is no clear understanding of just how many patients are affected by scarring alopecia today. Knowing the number of affected patients is necessary to bring attention to this hair loss epidemic and the urgency for better treatments, research to learn the cause, and advocacy for insurance reimbursement, just to name a few. SAF is working with a team of physicians, researchers ,and project analysts to use ICD-10diagnosis codes to identify a cohort of affected patients. Because diagnostic codes for scarring alopecia are poorly identified and limited, many patients can be incorrectly coded for other hair loss disorders, which makes accessing “clean” data a difficult process.

After the initial cohort of patients is determined, a deeper analysis needs to occur to weed out patients who may be miscoded. Diagnostic filters will be used to help with this process, and a programmer will be hired to conduct chart reviews to narrow down to the cleanest dataset possible. The prevalence statistics will be derived and calculated from this final dataset based on the current population in the US.

There has never been this type of study before, which is essential to quantify the critical mass of patients in recent years.

CAPAIR stands for Cicatricial Alopecia Patient Assessment &Impact Report. SAF is gathering and publishing this data report that will outline the burden of disease for scarring alopecia patient community. This report will be the first of its kind on cicatricial alopecia and will provide validated data from patients and the physicians who treat them.

The study methods include focus groups, survey development, IRB-approved protocol, study validation, dissemination, data analysis, outcome measurements, report development and review, and publication.

The study outcomes include a comprehensive publicly available, validated report that identifies the unmet needs of the scarring alopecia patient community for clinical and scientific research purposes, identification of psychosocial priorities needed to be addressed and attention for physician and other healthcare education for earlier detection and diagnosis to prevent progression.
There has never been this type of study before, which is critical toward gaining the attention of researchers and industry.

DID YOU KNOW…

  • There are published reports indicating an emerging epidemic of certain types of scarring alopecias.
  • SAF physician experts often speak anecdotally of the increasing numbers of new patients they see with a scarring alopecia diagnosis.
  • The challenge that exists is caused by a cascading effect. There are no known, approved, or targeted therapies to treat the disease since the cause of scarring alopecia is unknown. And there is little to no research investigating the cause because there is lack of comprehensive patient data and weak evidence to support current therapies.

OUR TIMELINE

Raise Seed Funding for Preliminary Work on CAP Study – $11,000 support from SAF members
Raise Seed Funding to Launch CAPAIR Study – $30,000 support from Pfizer

Conduct Focus Groups, Submit CAPAIR Protocol, and Create and Disseminate Patient Survey
Identify CAP Study Cohort and Begin Analysis
Spring Appeal to Raise Additional Funding to Reach $105,000 Goal

Analysis and Outcomes from Patient Survey
Draft of CAPAIR Study for Expert Review and Validation
Finalize and Publish CAP Study Report of Validated Prevalence Data

Finalize and Publish CAPAIR Report for Widespread Distribution
Work with Pharma, Researchers, and Other Stakeholders to Close Gaps Identified in CAPAIR
SAF Preparation for 2023 Research Initiatives