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.
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
- X-LINKED SURVEY
- TRANSITIONING TO ADULT CARE
Lurie Children's Hospital
- INSPIRE STUDY (Study Closed)
- ONLINE SURVEY FOR CAREGIVERS OF CHILDREN AFFECTED WITH ICHTHYOSIS
- GROWTH AND DEVELOPMENT STUDY
- MICROBIOME STUDY
- ARCI STUDY
The University of British Columbia
- RESEARCH STUDY FOR ARCI-LAMELLAR ICHTHYOSIS
Therapeutics Clinical Research
- TMB-001 FOR THE TREATMENT OF CONGENITAL ICHTHYOSIS (Phase 2B Closed, Phase 3 opens in 2022)
- KB105 FOR ADULTS WITH ARCI
- FEMALE CARRIERS OF GENETIC CHANGES ASSOCIATED WITH X-LINKED ICHTHYOSIS
- ITCH STUDY
Miami Itch Center - University of Miami
- GENE DISCOVERY OPPORTUNITY
- 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.