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Wellbeing of adults diagnosed with PCD


Participant Information Statement (version 3.0; Faculty of Medicine ethics #51871, September 4th 2019)

Corine Driessens from the University of Southampton is running a study to better understand the psychological wellbeing of individuals living with PCD. As an adult member of the PCD Family Support Group you are invited to take part in this study and complete this online survey. Before you decide, I would like you to understand the research being done and what it will involve. Please take your time to read and think about the following information. If anything is not clear and you would like more information or you have any questions, please contact me on the telephone number below.

Individuals diagnosed with chronic health conditions are in general more likely to experience psychological problems, like feeling gloomy, irritable, angry, anxious, and/or nervous. Psychological services, however, are not widely available. Not much is known about the psychological wellbeing of individuals living with PCD. I therefore would like to explore how individuals living with PCD are feeling, what kind of support they currently receive from family and friends, and what they think about their treatment. I have received funding from the Asthma, Allergy & Inflammation Charity to create this online survey.

This survey contains 9 short questionnaires regarding your feelings and views on:

The questions will take you approximately 35 to 45 minutes to complete. Your participation in this study is entirely voluntary and you are free to stop at any time without giving a reason. While completing the survey you may chose not to answer any questions that make you feel uncomfortable. If you change your mind, and no longer want to participate in the survey, you can close the survey, and the information you provided so far will not be saved. Please note however that once you click the submit button, we will no longer be able to withdraw your information. This is because we will not be collecting any personal information about you, and therefore we will not know what information was provided by you. You can also decide to complete the survey but just skip a few questions because they make you feel uncomfortable. You do not have to answer any questions you do not want to, just skip those questions. Your answers to this survey will NOT be saved unless you press the 'submit' button at the end of the survey. Please feel free to express your view.

The purpose of this research study is to explore how many members of the PCD Family Support Group age 11 and older experience psychological problems on any given day. It will also tell us if psychological services would be appreciated as part of the standard PCD care provided by PCD centre. In addition this information will help shape the format of the psychological services that could be provided.

The results of the study will be written up so that people can read about it, it will be shared with the members of the PCD Family Support Group, it might be used by the PCD teams to request funding to expand their services and/or shape future psychological services, but nobody will know that you participated in the study. The report will not mention your details or give any identification.

To the best of my ability your participation in this study will remain confidential, and only anonymised data will be published. Your survey answers will be sent to a link at where data will be stored in a password protected electronic format, to protect against the risk of a data breach. iSurvey does not collect identifying information such as your name, email address. Therefore, your responses will remain anonymous. No one will be able to identify you or your answers, and no one will know whether or not you participated in the study.

If you have any questions about this study or would like more information before you decide to participate, you may contact Dr Corine Driessens at 02381208798 or via email If you have any questions about your rights as a participant in this research, or if you feel you have been placed at risk, you can contact the University of Southampton Research Integrity and Governance Manager (023 8059 5058,


Data Protection Privacy Notice

The research team at the University of Southampton will be using information collected from you to undertake this study and therefore the University of Southampton will act as the data controller for this study. This means that they are responsible for looking after you information and using it properly. The University of Southampton will keep the information about you for 15 years after the study has finished.


Your rights to access, change, or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study while in the middle of completing the questions by closing the survey the information you have given will not be saved. However, once you click the submit button, we will not be able to destroy the information about your that we have obtained. This is because we have not collected personal data as part of the online survey. To safeguard your rights, we will use the minimum personally-identifiable information possible, and have therefore assigned a research number to the data, identifiable information such as name and address will not be associated with the information collected.


As a University we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use information about you in the ways needed, and for the purposes specified, to conduct and complete the research project. Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data protection Officer who will investigate the matter. Our Data protection Officer can be contacted at If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office.


This Participant Information Sheet tells you what data will be collected for this project and whether this includes any personal data. Please ask the research team if you have any questions or are unclear what data is being collected about you. The University’s data protection policy governing the use of personal data by the University can be found on its website (

Our privacy notice for research participants provides more information on how the University of Southampton collects and uses your personal data when you take part in one of our research projects and can be found at


Any personal data we collect in this study will be used only for the purposes of carrying out our research and will be handled according to the University’s policies in line with data protection law. If any personal data is used from which you can be identified directly, it will not be disclosed to anyone else without your consent unless the University of Southampton is required by law to disclose it.


Data protection law requires us to have a valid legal reason (‘lawful basis’) to process and use your Personal data. The lawful basis for processing personal information in this research study is for the performance of a task carried out in the public interest. Personal data collected for research will not be used for any other purpose.


To safeguard your rights, we will use the minimum personal data necessary to achieve our research study objectives. Your data protection rights – such as to access, change, or transfer such information - may be limited, however, in order for the research output to be reliable and accurate. The University will not do anything with your personal data that you would not reasonably expect.


If you have any questions about how your personal data is used, or wish to exercise any of your rights, please consult the University’s data protection webpage

( where you can make a request using our online form. If you need further assistance, please contact the University’s Data Protection Officer (


Thank you for taking time to read this information sheet. If you decide to participate in the study we thank you in advance!