https://doi.org/10.17037/DATA.00001077
A spreadsheet containing a subset of the original data from all respondents (n=85) from an online questionnaire entitled "Online survey to gain understanding of what people with cystic fibrosis aged 16+ would like to learn about their life expectancy and other outcomes". The survey was conducted in July 2016. Responses to all multiple choice questions are included. Free text responses have been removed in accordance with information provided to the respondents. Ages have been categorised. The data do not contain any identifying information.
The target population for the online survey were people with CF aged 16 and older who lived in the UK. The survey was performed using Bristol Online Surveys (https://www.onlinesurveys.ac.uk) and available online for a two-week period (4-18 July 2016). The survey was advertised at the start of this period by the Cystic Fibrosis Trust using Facebook and Twitter. Reminders were placed after 1 week. The survey was also promoted by others on social media.
The online survey was intended for completion by people with cystic fibrosis aged 16 or over who lived in the UK.
Data collection performed between 4 July 2016 - 18 July 2016.
People with cystic fibrosis aged 16 or over who lived in the UK.
Exact age has been placed into five year categories. Additional de-identification will be performed on a case-by-case basis.
This study was approved by the London School of Hygiene and Tropical Medicine (LSHTM) Research Ethics Committee (Reference 16138).
Cystic fibrosis, Life expectancy, United Kingdom
English
Data access is restricted to comply with the participant consent agreement.
| Forename | Surname | Faculty / Dept | Institution | Role |
| Ruth | Keogh | Faculty of Epidemiology and Population Health / Department of Medical Statistics | London School of Hygiene & Tropical Medicine | Data Creator |
| Filename | Description | Access status | Licence |
| CFQ_data.csv | Results of an online survey to determine the type of information that people with Cystic Fibrosis would like to learn about their life expectancy and other outcomes | Controlled | Data Sharing Agreement |
| CF-questionnaire.pdf | PDF export of web-based questionnaire to gain understanding of what people with Cystic Fibrosis aged 16+ would like to learn about their life expectancy and other outcomes | Open to all | Creative Commons: Attribution 3.0. |
| Codebook.html | Codebook for CF dataset | Open to all | Creative Commons: Attribution 3.0. |
| UserGuide.html | This document | Open to all | Creative Commons: Attribution 3.0. |