Cornelia de Lange Syndrome Survey

You are invited to take part in a research study.The purpose of this study is to characterize sleep patterns in people with Cornelia de Lange Syndrome. You will be asked to answer a number of questions regarding your/the participant's typical sleep. The time involved in filling out the survey is the primary discomfort. There is a risk to privacy before survey results have identifying information removed.

While the information gathered may not benefit you, this information will improve our ability to screen for and recognize sleep disturbances in the CdLS population and will benefit future CdLS patients.

You do not have to agree to be in this study. If you do not want to join the study, it will not affect your care here at the CdLS conference or at Cincinnati Children's Hospital Medical Center (CCHMC). If you have any questions about your rights as a research participant, or if you think you have not been treated fairly, you may call the CCHMC Review Board (IRB) at 513-636-8039. You may refuse to answer any or all questions in this survey.

We will collect information about you in this study. People at CCHMC who are involved in the study or who need to make sure the study is being done correctly will see the information. These people will use your information for the purpose of the study. We will continue to collect information about you until the end of the study unless you tell us that you have changed your mind. If you change your mind and don't want your information used for the study anymore, you can call Dr. David Smith at 513-636-4356 or the CCHMC Institutional Review Board at 513-636-8039. Just remember, if we have already used your information for the study, the use of that information cannot be cancelled. We try to make sure that everyone who needs to see your information uses it only for the study and keeps it confidential - but we cannot guarantee this. Your completion of this survey or questionnaire will serve as your consent to be in this research study.

In an effort to further understand the sleep problems in Cornelia de Lange syndrome, we would appreciate your answers to the following questions with respect to your child with CdLS

CDLS Assessment and Information Sheet

***Please answer this survey in its entirety as it pertains to the patient with CdLS***

OSA-18 Quality of Life Survey

Instructions. For each question below, please select the answer that best describes how often each symptom or problem has occurred during the past 4 weeks. Please select only one answer per question. Thank you.

Sleep Disturbance
During the past 4 weeks, how often has your child had...

OSA-18 Quality of Life Survey

Instructions. For each question below, please select the answer that best describes how often each symptom or problem has occurred during the past 4 weeks. Please select only one answer per question. Thank you.

Physical Symptoms
During the past 4 weeks, how often has your child had...

OSA-18 Quality of Life Survey

Instructions. For each question below, please select the answer that best describes how often each symptom or problem has occurred during the past 4 weeks. Please select only one answer per question. Thank you.

Emotional Distress
During the past 4 weeks, how often has your child had...

OSA-18 Quality of Life Survey

Instructions. For each question below, please select the answer that best describes how often each symptom or problem has occurred during the past 4 weeks. Please select only one answer per question. Thank you.

Daytime Problems
During the past 4 weeks, how often has your child had...

OSA-18 Quality of Life Survey

Instructions. For each question below, please select the answer that best describes how often each symptom or problem has occurred during the past 4 weeks. Please select only one answer per question. Thank you.

Caregiver Concerns
During the past 4 weeks, how often have the previous problems...

Pediatric Sleep Questionnaire (PSQ)

Please select Yes or No for the following questions.

While sleeping, does your child...

Please select Yes or No for the following questions.

Have you ever

Please select Yes or No for the following questions.

Does your child

Please select Yes or No for the following questions.

Does your child

Please select Yes or No for the following questions.

This child often

Pediatric Daytime Sleepiness Scale

Instructions: For each question below, please answer the following questions as honestly as you can by selecting one answer only.

Children's ChronoType Questionnaire (CCTQ)

Directions: The following questions ask about sleep/wake patterns during "Scheduled Days" in contrast to "Free Days". Think about your child's behavior during recent weeks when answering these questions. For questions with changing conditions (e.g., child goes to day care at 7:00 am 1 day/week and 9:00 am 3 days/week), fill in or select the most frequent or common answer.

Free Days
Child's sleep/wake pattern is "free" from the influence of individual or family activities (e.g. by school, day care, work, athletics etc.)

Directions: For each of the following questions, please select the answer that best describes your child. Make your judgements based on how the behavior of your child was in recent weeks. There are no "right" or "wrong" answers.

Directions: After answering the above questions, you may have a feeling which "Chronotype" or "Time-of-day type" your child is. For example, if your child would like to sleep quite a bit longer on "Free Days" compared to "Scheduled Days" or if it is difficult for your child to get out of bed on Monday mornings, then he/she is more likely to be an Evening Type person (a "Night Owl"). If your child, however, regularly wakes up and feels perky once he/she gets out of bed, and your child prefers to go to bed rather early than late, then he/she is more likely a Morning Type person (a "Morning Lark").

Current Sleep Patterns
Please select the appropriate word that BEST describes your child's current sleep patterns:

Currently, does your child have major problem(s)...?

Current Evening Sleep Behavior
Please select the appropriate word that BEST describes your child's current sleep patterns:

Current Nighttime Sleep Behaviors
Please select the appropriate word that BEST describes your child's current sleep patterns

Does your child awaken during the night....

Current Morning Awaking Behaviors
Please select the appropriate word that BEST describes your child's current sleep patterns.

Current Daytime Sleep Behavior/Naps
Please select the appropriate word that BEST describes your child's current nap patterns

Current Daytime Sleep Behavior/Naps
Please select the appropriate word that BEST describes your child's current nap patterns

Does your child...

Past Sleep History
The next series of questions are based on your child's sleep history in the PAST. If you cannot remember, please indicate this.

Past Sleep History
The next series of questions are based on your child's sleep history in the PAST. If you cannot remember, please indicate this.

Birth to One Year

Past Sleep History
The next series of questions are based on your child's sleep history in the PAST. If you cannot remember, please indicate this.

Birth to 1 Year of age

As you recall your child's first two months of your child's life

Family Sleep History

Family History of Sleep Problems

Does anyone in the family have the following sleep problems?

Sleep Environment
The next series of questions relate to your child's current sleep environment/bedroom