Clinical Appointments at the FIRST National Conference

Scheduling a clinical appointment at the conference is a unique opportunity to meet one-on-one with our ichthyosis medical experts as well as an amazing opportunity to play a key role in the advancement of ichthyosis research. You will be prompted to sign up for a clinical appointment on the conference registration page.  All clinical appointments will be held on Friday of the conference weekend and the scheduling will be managed by members of FIRST's Medical Advisory Board.
 

There are 2 opportunities for clinical visits:

  • 15-minute brief visit with a group of knowledgeable dermatologists.
  • A 1-hour visit to participate in any of the below research studies taking place at the conference, which will also include an opportunity to meet with knowledgeable dermatologists

For everyone

Yale/NIH: The National Registry for Ichthyosis and Related Skin Types

Who: All individuals with ichthyosis or related skin types

What: Medical history, photography, visit with ichthyosis experts, saliva (if no genetic diagnosis) 

Why: The Registry provides free genetic testing and informs participants of studies and clinical trials related to their ichthyosis type.

Enrollment:  Consent and history forms can be completed before and at conference.

Northwestern University: Collecting shedding skin for understanding ichthyosis  

Who: Individuals with any/all types of ichthyosis at any age (painless)

What: We can learn a lot about the biology of ichthyosis from painlessly collecting outer skin scales with a special technique called “tape stripping”

Why: Information learned can be used to consider new therapy approaches for ichthyosis

Enrollment: We will collect clinical information and take tape strips throughout the meeting (20-30 mins) – the more we collect, the more we can learn

 

For adults only

Yale/NIH study of microbes that normally live on ichthyosis skin.  

Who: Those over 18 years old who are or will be enrolled in the Ichthyosis Registry and have mutations in either KRT10, TGM1, ABCA12, ALOXB3, SPINK5 or ATP2A2.

What: Superficial, painless surface swabs and measurements (temperature, hydration, etc) from 10 locations

Enrollment: Must occur at least 2 weeks before meeting 

 

For adolescents

Northwestern University: Bullying in Pediatric Ichthyosis Patients and its Psychosocial Effects 

Who: Children/adolescents 8yo-17yo with any/all types of ichthyosis and a parent (dyad)

What:  Children with ichthyosis often experience bullying, which can be associated with depression and anxiety. This study allows children, adolescents, and parents to share anonymously their experiences with bullying. 

Why: By better understanding the bullying experience, we can suggest ways to prevent and manage

Enrollment: Consent by parent and >12 year olds can be done in advance or onsite; Questionnaires for parent and child (separately completed) to be done at meeting (30-40 mins)

Northwestern University: Comparison of disease knowledge in dyads of parents and adolescents with chronic skin disorders 

Who: Adolescents 12yo-17yo with any/all types of ichthyosis and a parent

What: We are studying how much adolescents/parents know about their ichthyosis

Why: To identify the needs for educating families better about ichthyosis

Enrollment: Consent by parent and adolescents can be done in advance or onsite; Questionnaires for parent and child (separately completed) to be done at meeting

 

10 years or older

Northwestern University: Biobanking of skin cells from ichthyosis patients: contributing towards research

Who: Individuals with any/all types of ichthyosis 10 years of age or older

What: We can learn a lot about the biology of ichthyosis from painlessly collecting outer skin scales with a special technique called “tape stripping”

Why: Information learned can be used to consider new therapy approaches for ichthyosis; having a biopsy for culture will allow many studies with the one biopsy

Enrollment: Consent preferred in advance to allow planning and scheduling; Collecting small biopsies (size of a pencil eraser) from the upper arm to grow cells to test new therapies and establish ichthyosis models for study. Most biopsies will be collected on Friday before 6 pm, but if we have many volunteers will take biopsies on Sat. as well. We can involve up to 30 patients. No special preparation required, but a stitch will be placed that either your doctor or someone at home can take out shortly after the conference (we will teach and provide materials).  This will take 35-45 minutes. 

 

14-22 Years Old

Northwestern University: Transition Readiness Assessment in Adolescents with Genetic Chronic Skin Disorders  

Who: Individuals with any/all types of ichthyosis 14-22 years old

What: Adolescents and young adults need to learn to manage their own care. This study investigates the level of transition readiness in adolescents and young adults with ichthyosis. We will compare the baseline transition readiness with ichthyosis vs. others with genetics skin conditions. 

Why: To develop tools to help manage optimally the ichthyosis during the transition from adolescence to adulthood

Enrollment: Consent can be done in advance or onsite; Questionnaires to be done at meeting

You will be prompted to sign up for a clinical appointment on the conference registration page. All clinical appointment scheduling will be managed by Dr. Keith Choate of Yale University.


Conference date & location:

Friday, June 24, 2022 7:00 am - Sunday, June 26, 2022 2:00 pm                  #FIRSTNC22
Crowne Plaza Providence-Warwick Airport
801 Greenwich Drive
Warwick, RI 02886
1-401-732-6000

 

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