Clinical Trials & Patient Recruitment Opportunities
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 firstname.lastname@example.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
- TMB-001 FOR THE TREATMENT OF CONGENITAL ICHTHYOSIS (PHASE 3)
- MICROBIOME STUDY
- ICHTHYOSIS & AGING STUDY (Study Closed)
- XLI & IV MEMORY SURVEY (Study Closed)
- 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
- GROWTH AND DEVELOPMENT STUDY
- HARLEQUIN ICHTHYOSIS MEDICAL RECORDS STUDY
Boston Children's Hospital
- ITCH STUDY
Miami Itch Center - University of Miami
- KB105 FOR ADULTS WITH ARCI
- KID SYNDROME RESEARCH OPPORTUNITY
- THE NATIONAL REGISTRY FOR ICHTHYOSIS AND RELATED SKIN TYPES
- 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.