Research and Trials

  In an effort to find current trials and case studies I will update any information I gather in this section. If you know of something going on please share so we all have the chance to get involved!

 

The best place to check for current trials is @ http://www.clinicaltrials.gov – however, it doesnt always list everything possible.

Most clinical trials involve melanocytic nevus or large congenital so the opportunities there are much larger than those involving Inflammatory or linear.

– Yale University School of Medicine/Yale-New Haven Hospital

The goal of this study is to find out how inheritance of specific genes causes some people in families to develop skin diseases. This is done by analyzing DNA molecules. You will be sent a packet to complete with consent forms to use your informations, family history and a kit to collect a DNA sample. If you have had a biopsy they will request those results as well. This is solely for research purposes, but remember… where some studies may take years to complete they may be able to develop better tests and treatments in the future.

To participate you must have a diagnoses of Linear Epidermal Nevus or Inflammatory Linear epidermal Nevus. Please e-mail Dr. Keith Choate at the address provided below and let him know you are interested in participating.

Keith.Choate@yale.edu

 

– Ultragenyx Pharmaceutical Inc 

The study will be conducted in adults aged 18 years or older with TIO or ENS whose tumor/skin lesion is inoperable to assess the efficacy and safety of KRN23 administered via subcutaneous injections monthly (every 4 weeks) for a total of 48 weeks. The study will enroll approximately 6 patients with TIO or ENS. Subjects will need to discontinue oral phosphate and vitamin D metabolite therapy prior to randomization and throughout the duration of the study.

Contact: Kim Mooney 415-483-8872 kmooney@ultragenyx.com to participate and get further information.

 

-OHSU (Oregon Health and Science University)

A Phase 2 Multicenter Study to Evaluate the Safety, Pharmacokinetics, and Preliminary Efficacy of Asimadoline in Adult Subjects with Pruritus Associated with Atopic DermatitisThe purpose of this study is to determine the safety and efficacy of asimadoline in adults experiencing itching associated with eczema.

Must be 18 years or older and have a diagnosis of eczema for at least six months. Cannot be pregnant. Cannot have a history of cancer within the past five years, HIV infection or alcohol / drug abuse within the past three years.

Contact:

Maureen Keene
503-228-7350
keenem@ohsu.edu

 

– PeDRA – I was able to speak with someone in the research department at the Pediatric dermatolgy research alliance in Wisconsin who also partner with Seattle Children’s Hospital and the University of Washington. I will hear back from them next week sometime about any possible upcoming research trials around inflammatory or linear epidermal nevus.

Update: I never heard back but will be contacting them again today 12/18/15 to follow up on this.

 

– Oregon Medical research Center currently does not have any Nevi related studies or trials.

 

I will continue to update this so keep checking in.

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