Establishing the existence of non-pharmacological multifactorial patterns within Pulmonary Sarcoidosis (Study 1).

Ethics Code: 1617/028

Thank you for considering being a participant in this project.

Below you will find a short background to our work, and an outline of what you will be required to do as a participant in this study.

The aim of this study is to establish the existence of any patterns or traits within pulmonary sarcoidosis specifically looking at the interaction of multiple factors and their combined outcome.

Unfortunately, Sarcoidosis has a chronic shortage of research. This lack of research is coupled with current researchers’ focus solely on results of tests such as lung function, at the expense of patient feedback on the condition, despite lung function being shown to be a poor indicator of overall health including primary and secondary symptoms within Sarcoidosis. Therefore, the purpose for the current study and its future findings are driven by informed patient experience from a wide range of patients from numerous geographical locations and backgrounds.

Am I eligible to take part in the study? 

You are eligible to take part in the study if you have been diagnosed with pulmonary sarcoidosis (this can be in addition to other forms of sarcoidosis and conditions) and over the age of 18 years.

What is expected of me?

The study will involve you completing an electronic questionnaire comprised of four validated surveys, with closed ended questions such as gender & age as well as open questions including your experiences and views on what improves/worsens your symptoms.

The procedure involves completing an online survey that will take approximately 30 minutes. Your responses will be confidential and we do not collect identifying information such as your name, email address or IP address.

What are the benefits of taking part?

The benefits of this study will be to establish the existence of non-pharmacological multifactorial patterns within Pulmonary Sarcoidosis. The study will not only add knowledge to the current body of research but also help identify future areas of relevant research that may have been overlooked before or lacked scientific support.

What are the risks of taking part?

No identified risks other than those of typical computer use and minor emotional distress.

Some questions might cause minor emotional distress, although this risk is very low, as most of the questions are general (e.g. type of sarcoidosis) and not personalised. In cases where participants find some of the questions upsetting, they will have the option to skip them or exit the questionnaire at any time. Risks associated with using display screen equipment e.g. PC, Laptops, include upper limb disorders, back ache, fatigue, stress and temporary eye strain or headaches. Ensure you are positioned correctly and the questionnaire will only take a maximum of 30 minutes to complete. However, take short pauses and breaks if necessary.

What if I have a question or a query? 

We are happy to answer any queries that you may have regarding the study. In the event of having any health concerns, we will advise you to contact your GP for further screening and advice.

What if I decide to withdraw?

Participants are permitted to withdraw from the study at any time and data from them will not be used.

What about my Confidentiality?

Any information given to us by you will remain confidential and all data will be kept anonymous. All data will be coded and saved as encrypted password protected files on a PC. Results of testing and analysis along with age, gender will be recorded. Participants will remain anonymous throughout the research, including the publication of the research which may result in availability of the research at the University Learning Resources Centre, through scientific journals and conference presentation. Any hard copy versions will be kept in locked offices/cabinets of lead applicant.

The only personnel authorised to access the data will be the researcher, principle investigator and the project participants (their individual data only).

Link to study – https://kingstonpcs.eu.qualtrics.com/jfe/form/SV_7OtM9u2tT0eSKXj

If you have any questions or problems, please do not hesitate to contact the researchers or project supervisor:

Name of Researcher: Luke Morton-Holtham

Email: K1214556@kingston.ac.uk  

Name of Supervisor: Dr Hannah Moir

Email: H.Moir@kingston.ac.uk             

Thank you for your time & contribution to this study.