Ms Sandra Murphy, Clinical Specialist Dietitian is carrying out a research survey to inform the development and improvement of the post-transplant dietetic service at the Mater University Hospital.   

If you are a PWCF and patient of the National Heart and Lung Transplant Centre of the Mater Misericordiae University Hospital, we invite you to take part in this important survey.

Introduction to the Survey

You are being invited to take part in a survey. The Nutrition and Dietetic Department are currently undertaking a review of the dietetic service available to people with Cystic Fibrosis attending the National Heart and Lung Transplant Centre in Mater Misericordiae University Hospital. As a patient receiving care from this service, your views are very important and will provide us with valuable information, to show us where we can make improvements and develop the dietetic service in the area. We would be grateful therefore, if you could take the time to complete this questionnaire. This questionnaire is being coordinated by Sandra Murphy, Clinical Specialist Dietitian with support from Cystic Fibrosis Ireland.

Before you decide whether or not you wish to take part, please read this information sheet carefully. Ask Ms Murphy or Cystic Fibrosis Ireland any questions.

What will I have to do?
The survey involves completing an online questionnaire hosted on SmartSurveyUK. The survey will be open for three weeks, you can complete the questionnaire at any point during this time. There will be approximately 15 questions covering topics such as: your preferences for the dietetic service, aspects of your nutrition you struggle or would like additional support with, and some demographic questions about you.

What are the benefits?
The survey will give you an opportunity to voice your preferences for the dietetics service. The results will allow the dietetics team to tailor their delivery of the service to the CF community in future.

What are the risks?
This research involves you sharing information via a questionnaire. We will not track the IP addresses of people who take part in the research. You will not be asked for your name or contact details. We do ask some demographic questions, these include: your age bracket, the CF clinic you previously attended and your gender.
There is a small risk that a connection to your identity could be made by the answers to these questions. Extreme care will be taken to ensure the confidentiality of all data and the risk to participants of a breach of confidentiality is considered low. Only Sarah Tecklenborg in CF Ireland will have access to the full data set. She will remove any identifiable information from your responses before sending a summary report to Ms Sandra Murphy.

What if I do not want to take part?
Your participation in this study is entirely voluntary. You do not have to take part. You are free to withdraw, without giving a reason. Should you feel at any stage that you want to stop taking part in the survey, then please do. As the data we are collecting is anonymous, it will not be possible to destroy your data once it is submitted via SmartSurvey.

What happens to the information?
This survey is being conducted by Ms Sandra Murphy working with CF Ireland. The information gathered from the study will be handled in complete confidence. CF Ireland will undertake the survey using SmartSurvey. CF Ireland will store the dataset on a password protected, encrypted computer for up to 7 years. The Research and Policy coordinator in CFI, currently Dr Sarah Tecklenborg, will be the only person with access to this data. CF Ireland will write a descriptive review of the responses and this will be provided to Ms Sandra Murphy.

Is the study confidential?
Only Sarah Tecklenborg in CF Ireland will have access to your responses from the SmartSurvey account. Sarah will remove any identifiable responses, from the summary report before providing it to Ms Sandra Murphy. In addition, the survey will not track your IP address and you will not be asked for your name or date of birth in the survey.
All parties who have access to your personal data are bound to use the data in accordance with the General Data Protection Regulation and national laws. Arrangements are in place so that personal data will be processed only as is necessary to achieve the objectives of this research study and will not be processed in a way that damage or distress will be caused to the participant.
When you tick to give your consent, you are agreeing to take part in the survey and for your data to be processed.

What if I have more questions or do not understand something?
If you do not understand any aspect of the research please contact either of the organisers, Ms Sandra Murphy (Mater) or Dr Sarah Tecklenborg (CFI) and discuss any questions that you might have, their contact details are at the end of this leaflet. It is important that you feel completely at ease taking part and that all your questions have been answered.

Who should I contact for information or complaints?
If you have any concerns or questions, you can contact:

Ms Sandra Murphy,
Clinical Specialist Dietitian in Cystic Fibrosis and Heart and Lung Transplant
Mater Misericordiae University Hospital
Email: sandramurphy@mater.ie

Dr. Sarah Tecklenborg,
Senior Research and Policy Coordinator, Cystic Fibrosis Ireland, 24 Lower Rathmines Rd, Dublin 6. Tel: 014962433
Email: stecklenborg@cfireland.ie

Under GDPR, if you are not satisfied with how your data is being processed, you have the right to file a complaint with the Office of the Data Protection Commission, 21 Fitzwilliam Square South, Dublin 2, Ireland. Website: www.dataprotection.ie