Participate in Research
1. On Saturday, June 25, investigators from Yale University will be enrolling patients int he Yale Registry, the only US-based program focused on better understanding disorders of keratinization from a genetic and clinical perspective. This group continues to make remarkable progress, largely thanks to the participation of FIRST members. For new enrollees, the study will involve providing a saliva sample, photographs, and completing a questionnaire. For those already enrolled, there will be an opportunity to update information. Sign ups will be included on the registration form.
2. At the last FIRST conference in Indianapolis, Dr. Amy Paller, one of our Emeritus Board Members, enrolled several participants in a study. She has now evaluated skin samples from more than 30 individuals with ichthyosis with exciting results. Dr. Paller has submitted the information for publication, and is planning a clinical trial for affected adults based on her discoveries, which have led to a possible new way to take away the redness and possibly the scaling of ichthyosis with a monthly injection. At the FIRST National Conference in San Diego, Dr. Paller and her team wll be enrolling more children (≥8 years old) and adults with ichthyosis (excluding ichthyosis vulgaris and x-linked recessive in the study. This research will involve clinicial examination, measurements of water loss through the skin, photos, a blood sample, tape strips and a small skin biopsy. You can also choose to participate in a mini-study involving only clinical examination, water loss measurement and tape strips.
We have an additional opportunity for participation. Itch is a frequent symptom of ichthyoses, and can have an effect on sleep, mood and activities. To better capture the effects of itch on quality of life, we are developing an itch questionnaire that will be applicable to a wide variety of skin problems, including ichthyosis. To do this, we are seeking children with ichthyosis (ages 8-17) who have itch, together with a parent, to each complete a survey to help us develop these questions about itch. It's very quick, but we are hoping that many will volunteer on Friday at the meeting to fill this out for us. These studies will only be on Friday, June 24. If you are interested in participating in this one-day study, please contact Thy Huynh at firstname.lastname@example.org; she will be pre-registering interested individuals.