UNIVERSITY OF CALIFORNIA LOS ANGELES- STUDY INFORMATION SHEET
Catathrenia - Exploratory Analysis of Patient Perspectives and Breathing Pattern
Dr. Soroush Zaghi, Dr. Dinesh Chhetri, and Jose Alonso from the Department of Head and Neck Surgery at the University of California, Los Angeles (UCLA) are conducting a research study.
You were selected as a possible participant in this study because you are over 18 years of age and because you have acknowledged that you have either been diagnosed with catathrenia by a medical professional or have been told by a family member or friend that you produce unusual expiratory moaning and groaning during sleep.
Your participation in this research study is voluntary.
Why is this study being done?
You are being asked to participate in a survey to help sleep disorder specialists learn more about a specific sleep disorder called “catathrenia.” Catathrenia is a sleep disorder characterized as expiratory groaning or moaning during sleep. It is often confused with snoring. The purpose of this study is to systemically study this condition so that we can have better information to provide to the catathrenia community regarding the etiology, manifestation, and quality of life impact of the disorder. Your participation is voluntary, there is no obligation to participate, and your responses will be kept confidential if you decide to participate.
What will happen if I take part in this research study?
If you volunteer to participate in this study, the researcher will ask you to do the following:
Complete a 10 minute survery that includes questions about your breathing and sleeping pattern, past medical history, and your experiences with catathrenia.
OPTIONAL: Submit an audio recording of the breathing pattern you believe or have been told is characterized as catathrenia (expiratory groaning or moaning during sleep)- for privacy reasons, please do not include your real name with the submission.
How long will I be in the research study?
Participation will take a total of about 10 to 20 minutes. There is no long-term follow up.
Are there any potential risks or discomforts that I can expect from this study?
There are no anticipated risks or discomforts.
Are there any potential benefits if I participate?
You will not directly benefit from your participation in this research study.
The results of the research may help medical professionals better understand catathrenia and provide better information to the catathrenia community regarding the etiology, manifestation, and quality of life impact of the disorder.
Will information about me and my participation be kept confidential?
Any information that is obtained in connection with this study and that can identify you will remain confidential. It will be disclosed only with your permission or as required by law. Confidentiality will be maintained by means of anonymous submission of survey and audio files. Participants will complete an online survey via Google Forms. Once the survey is completed, the participants will be referred to a page on Google Forms with an upload tool that will allow them to anonymously upload an audio file recordings of their breathing pattern. The file will be uploaded to a secured Google Drive and the participants will be asked to label the audio file with a unique identifier that consists of the date/time that the survey was submitted online. The Google Drive will be restricted such that only the study coordinators will be able to edit, access, and the view information collected. The surveys and audio files will not be linked to the participants contact information or personal identity in any way. You may request that your uploaded audio files and/or survey be erased by emailing us with an accurate description of the file and approximate date and time of submission.
Email addresses will only be obtained if the potential study participants choose to email us with a question about the study. We will respond to the question and then delete all of the emails at the end of the study data collection. A list of email addresses will not be collected for future use.
What are my rights if I take part in this study?
You can choose whether or not you want to be in this study, and you may withdraw your consent and discontinue participation at any time.
Whatever decision you make, there will be no penalty to you, and no loss of benefits to which you were otherwise entitled.
You may refuse to answer any questions that you do not want to answer and still remain in the study.
Who can I contact if I have questions about this study?
The research team:
If you have any questions, comments or concerns about the research, you can talk to the one of the researchers. Please contact: Jose Alonso, MS3 at JAlonso@mednet.ucla or Soroush Zaghi, MD at firstname.lastname@example.org.
UCLA Office of the Human Research Protection Program (OHRPP):
If you have questions about your rights while taking part in this study, or you have concerns or suggestions and you want to talk to someone other than the researchers about the study, please call the OHRPP at (310) 825-7122 or write to:
UCLA Office of the Human Research Protection Program
11000 Kinross Avenue, Suite 211, Box 951694
Los Angeles, CA 90095-1694