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

• NETHERTON SYNDROME STUDY
  Azitra
• NETHERTON SYNDROME STUDY
  Boehringer-Ingelheim
• NETHERTON SYNDROME STUDIES
  Quoin Pharmaceuticals
• GROWTH AND DEVELOPMENT STUDY
  Yale University
• KB105 FOR ADULTS WITH ARCI (enrollment is closed, study is underway)
  Krystal Biotech
• THE NATIONAL REGISTRY FOR ICHTHYOSIS AND RELATED SKIN TYPES
  Yale University
• STUDY FOR SJOGREN-LARSSON SYNDROME
  Omaha, NE / Portland, OR / Pittsburgh, PA

• For a complete list of studies, please visit https://clinicaltrials.gov/

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.