CAPAIR stands for Cicatricial Alopecia Patient Assessment & Impact Report. SAF is sending out an anonymous survey to collect data from the scarring alopecia community that will outline the burden of this disease. The data will be compiled into a comprehensive report that will be the first of its kind on scarring alopecia.
The CAPAIR study is needed to drive the much-needed attention to this growing epidemic. It is an online anonymous survey for participants to self-report about their medical history, journey to diagnosis, physician access and knowledge, treatments, time and financial impact, and quality of life. .
The study outcomes include a comprehensive report that identifies the unmet needs of the scarring alopecia patient community for clinical and scientific research purposes, identification and attention to the associated psychosocial issues, and need for medical education so scarring alopecia can be identified earlier and prevent disease progression.
There has never been this type of study before, which is critical toward gaining the attention of researchers and industry.
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.
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.
Survey Questionnaire Sections:
Understanding Your Diagnosis
Physician Access & Knowledge
Time & Financial Impact
Quality of Life
CAPAIR Study Partially Funded by Pfizer, inc