Note from Mary Fete, NFED Executive Director
Our Scientific Advisory Council has approved dermatologist Dr. Amy Paller’s research survey to share with you. Dr. Paller is conducting a study to learn more about “Transition Readiness Assessment in Adolescents with Genetic Chronic Skin Disorders.”
She is looking for individuals to participate in the survey. You can learn more below.
Transition Readiness Assessment in Adolescents with Genetic Chronic Skin Disorders
Dr. Amy Paller and Northwestern University/Ann & Robert H. Lurie Children’s Hospital of Chicago would like to invite you to participate in a research study on the readiness to transition to an adult model of health care. This study involves completion of an online survey.
This study investigates transition readiness in adolescents with genetic chronic skin disorders, such as ectodermal dysplasia. A health care transition is defined as when an adolescent moves to an adult model of health care, such as a patient taking on more responsibility in managing their health. A transition to an adult model of health care is especially important for patients with genetic chronic skin conditions, as these present recurrent and new challenges into adulthood.
Through a survey, this study measures different areas of a patient’s readiness to transition, such as self-management skills and knowledge of their skin condition. By identifying the primary areas of need in adolescents with genetic chronic skin conditions, we then hope to design a training program for patients with genetic chronic skin conditions that prepares adolescents for an adult model of health care.
Our ultimate goal with this program is to increase the retention and quality of health care received when patients become adults. By participating in this study, you will share your own experience with ectodermal dysplasia to help us understand how we can help prepare patients like yourself for health care in adulthood.
How to Participate in This Study
If you are a parent/caregiver of or an adolescent between 14 and 22 years old with ectodermal dysplasia or another genetic chronic skin condition, please consider participating in our survey study on transition readiness.
The survey is for the adolescent to take themselves. A parent/caregiver can help the adolescent with explaining questions but cannot answer questions.
- If you/your adolescent is between 14 and 16 years old:
- If you/your adolescent is 17 years old:
- If you/your adolescent is between 18 and 22 years old:
Dates of Study: Now through 4/30/2022
(This study is Lurie Children’s IRB #2021-4393, Transition Readiness Assessment in Adolescents with Genetic Chronic Skin Disorders, Dr. Amy Paller. The content of this flier has been approved by the Lurie Children’s IRB.)