Interested in Partnering with FIRST for Patient Recruitment?

Partnering with patients, and their advocates, has become the cornerstone of research in the field of rare disease. Currently many families and individuals in the FIRST community, affected with ichthyosis or a related skin type, are enthusiastically participating in clinical trials, behavioral studies,  member surveys and more.  And by partnering with the FIRST community, product developers and medical investigators have a more direct opportunity to finding the key to acceleration for better treatments and eventual cures.

If you are interested in partnering with FIRST members for a research study, survey or clinical trial, please contact Christine Wassel at cwassel@firstskinfoundation.org.

Understanding Clinical Research - Please watch the below informative webinar  from Anna Brucker, MD, MSCS, co-founding PeDRA member and FIRST Medical & Scientific Advisory Board member, as she provides an overview of what clinical research is, how it works, who benefits, and why it’s important.

Current Patient Recruitment Opportunities

• A comparison of symptoms of distress and associated risk factors in X-linked ichthyosis, ichthyosis vulgaris and psoriasis
• DOES ICHTHYOSIS AFFECT HOW YOU FEEL ABOUT YOUR BODY?
• GRIDD PROJECT SURVEY (Study Closed)
• ONLINE SURVEY FOR CAREGIVERS OF CHILDREN AFFECTED WITH ICHTHYOSIS
• GROWTH AND DEVELOPMENT STUDY
  Yale University
• NORTHWESTERN SURVEYS FOR ADULTS, PARENTS & CHILDREN
  Northwestern University/Lurie Children's Hospital
• ARCI STUDY
  The University of British Columbia
• RESEARCH STUDY FOR ARCI-LAMELLAR ICHTHYOSIS
  Therapeutics Clinical Research
• TMB-001 FOR THE TREATMENT OF CONGENITAL ICHTHYOSIS
  Timber Pharmaceuticals
• KB105 FOR ADULTS WITH ARCI
  Krystal Biotech
• REFLECT STUDY FOR ARCI-LAMELLAR ICHTHYOSIS
• FEMALE CARRIERS OF GENETIC CHANGES ASSOCIATED WITH X-LINKED ICHTHYOSIS
  Cardiff University
• MENTAL HEALTH AND QUALITY OF LIFE IN ICHTHYOSIS (Study Closed)
  Yale
• NEW ICHTHYOSIS VULGARIS STUDY (Study Closed)
• SKIN REDNESS STUDY (Study Closed)
  Northwestern University
• LAMELLAR/X-LINKED STUDY (Study Closed)
  San Antonio / San Diego / Chicago / New Haven / Philadelphia 
• ITCH STUDY
  Miami Itch Center - University of Miami
• GENE DISCOVERY OPPORTUNITY
  Yale University
• STUDY FOR SJOGREN-LARSSON SYNDROME
  Omaha, NE / Portland, OR / Pittsburgh, PA
• HARLEQUIN ICHTHYOSIS MEDICAL RECORDS STUDY
  Boston Children's Hospital
• DARIER-WHITE / HAILEY-HAILEY DISEASE
  Indiana University Research Center

The National Center for Advancing Translational Sciences division of NIH offers a toolkit for understanding the clinical trial process.  Visit their website via this link to access the toolkit.