Letter to the Parents

Dear BCCNS parents,

Basal Cell Carcinoma Nevus Syndrome, aka Gorlin-Goltz Syndrome, may be a rare genetic condition for everyone else. However, affected families, especially children who are afflicted, have to adjust to a whole new way of life, encompassing the medical, socio-psychological and physical struggles of the disorder at a very young age, and throughout their lifetime.

In line with our commitment to understand some of the challenges that these brave hearts endure, we are seeking to examine healthcare satisfaction, quality of life, and coping strategies among children as we direct our collective efforts to improve their future by influencing quality medical care and creating socially amicable, resilient environments.

The best way to accomplish this is by asking for your participation in this collaborative survey in order to provide us insight on your child’s habits, their specific doctor-patient interactions, challenges and coping mechanisms influenced by Basal Cell Carcinoma Nevus Syndrome.

We appreciate your deliberative and meaningful participation.

“Raise Awareness and Find A Cure”

Thank You!
Purpose:
The purpose of this study is to determine the behaviors and attitudes that children with Basal Cell Carcinoma Nevus Syndrome (BCCNS; also known as Basal Cell Nevus Syndrome 'BCNS' or Gorlin-Goltz Syndrome) express toward the disorder. This will be accomplished using a survey to capture the incidence of symptoms in children with BCNS as well as the psycho-social and physical toll it takes on children. The current project would help to define disease burden among children (infancy -18 years) with BCNS, and will aide to generate more interest in research and development efforts worldwide.

Researchers:
This research study is being conducted as a collaboration between the University of Central Florida’s College of Medicine and Ameriderm Research.

Community Advocacy & Research Partner:
This effort is being supported by the Basal Cell Carcinoma Nevus Syndrome Life Support Network, a national patient advocacy non-profit organization located in Ohio for individuals with BCNS.

Directions:
We encourage the parents/guardians to complete this survey with as much involvement from the child as possible, so that this can be a learning opportunity for all parties involved. Participating in this survey does provide a learning opportunity for the child’s family as you discuss the terminology and manifestations.

- Parent and/or legal guardian should complete the survey on behalf of each living or deceased child with BCNS.

- If you have more than one child with BCNS, please fill out one survey per child (example: 3 separate surveys for 3 children afflicted with BCNS).

- We strongly encourage you to fill out additional survey(s) for child/children deceased due to BCNS (if applicable); their information is as important to us.

T