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

• TMB-001 FOR THE TREATMENT OF CONGENITAL ICHTHYOSIS (PHASE 3)
  Timber Pharmaceuticals
• INDIVIDUAL OR CAREGIVER SURVEY
  Northwestern University
• XLI & IV MEMORY SURVEY
  Cardiff University
• ARCI STUDY
  The University of British Columbia
• DARIER-WHITE / HAILEY-HAILEY DISEASE
  Indiana University Research Center
• FEMALE CARRIERS OF GENETIC CHANGES ASSOCIATED WITH X-LINKED ICHTHYOSIS
  Cardiff University
• GROWTH AND DEVELOPMENT STUDY
  Yale University
• HARLEQUIN ICHTHYOSIS MEDICAL RECORDS STUDY
  Boston Children's Hospital
• INSPIRE STUDY  (Study Closed)
  Innovaderm Research
• ITCH STUDY
  Miami Itch Center - University of Miami
• KB105 FOR ADULTS WITH ARCI
  Krystal Biotech
• KID SYNDROME RESEARCH OPPORTUNITY
  FIRST
• MICROBIOME STUDY
  Yale University
• THE NATIONAL REGISTRY FOR ICHTHYOSIS AND RELATED SKIN TYPES
  Yale University
• RESEARCH STUDY FOR ARCI-LAMELLAR ICHTHYOSIS
  Therapeutics Clinical Research
• STUDY FOR SJOGREN-LARSSON SYNDROME
  Omaha, NE / Portland, OR / Pittsburgh, PA
• TRANSITIONING TO ADULT CARE
  Lurie Children's Hospital

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.