Please note that COPD Support Ireland is in no way endorsing any of these surveys / studies. We are merely making them available to view and each individual can decide themselves if they wish to participate in any study or survey. If you are interested in participating in any of these then please contact the organisation / individual undertaking the study / survey directly.
Mobilise-D Delphi Survey
30/05/23
My name is Alison Keogh. I am a researcher based in Trinity College Dublin and linked with the Insight Centre in UCD. I am writing to you on behalf of the Mobilise-D research team - https://www.mobilise-d.eu
Mobilise-D is a large European project that is looking to develop new outcome measures of walking, in a real world environment for people with chronic conditions, including COPD. We have an active patient and public involvement structure which I am leading. One of the topics we are currently working on, is understanding how people want their walking data over time to be visualised back to them. Specifically, what kind of information is meaningful to them.
As a result, we are conducting an online Delphi study (a short round-based survey) focused on understanding the importance of information gathered from wearable sensor devices in relation to the walking patterns of individuals living with multiple sclerosis, Parkinson’s disease, hip fracture, or chronic obstructive pulmonary disease. This study was co-designed alongside our patient advisors.
The survey consists of three rounds spread over 3-6 months, will take approximately 20-30 minutes for each round and the patients are seen as the experts in this process, guiding us to create tailored solutions to all points raised.
Please see the link to the registration page: https://forms.office.com/e/9gbN1YtytZ
Should you have any questions or require further information, please do not hesitate to contact me about it.
Alison Keogh
alison.keogh@insight-centre.org
HSE/SETU Research Study
26/04/23
HSE and SETU are exploring ways to help people be more Physically Active, and you are invited to take part. Aged between 35-60? Resident in ROI? Living with COPD? Please speak to us.
Simply click on this link to get involved
https://forms.office.com/e/dj7RMAkrb0
The experiences of informal caregivers and their-care recipients with COPD (Chronic Obstructive Pulmonary Disease).
28/03/23
My Name is Jennifer Dean – King and I am a mature post-graduate researcher in the Department of Psychology in Maynooth University working under the supervision of Dr Rebecca Maguire. I am now commencing a qualitative study on the experience of informal caregivers and their care-recipients with COPD. I am particularly interested in interviewing both caregivers and care-recipients on the experiences of their daily life currently and also before and during the pandemic. It is intended that the interviews would also consider what would be helpful in terms of guidelines or a framework that could be used to support them in their daily life. The research will consist of interviews that would be between 30 to 60 minutes in duration and could be either online or face to face depending on the participants’ preference.
If you are eligible and interested in participating, please contact me directly at : jennifer.deaneking.2018@mumail.ie
the FlexiFITT App Survey by DCU students
22/11/22
Myself and a group of 5 other final year Sport Science and Health Students in DCU are currently completing a business module that requires us to come up with a business plan. We have decided on the idea of a mobile fitness app that caters for the individual needs/goals of people with chronic conditions. We think that it is extremely important that individuals with these conditions have the opportunity to exercise independently and this app aims to facilitate this. We were wondering if it would be possible to have people involved with your organisation fill out a survey so that we can tailor the app to specific needs and wants. If you would be interested in helping us out with this I have attached the survey below.
Any help would be greatly appreciated.
Many thanks,
Holly Graham
You are invited to take part in a research study called SEURO (Scaling EUROpean citizen driven transferable and transformative digital health), which is being carried out by researchers from NetwellCASALA, at Dundalk Institute of Technology, and Trinity College Dublin.
19/09/22
This study is taking place to find out if new technology can help people living with more than one chronic health condition to manage their health and well-being, and to receive improved care.
Participants will be randomly assigned to one of three groups. Two of the groups will receive and use variations of the technology in their homes; the remaining group will continue to receive their existing care. The objective is to examine the effectiveness of the technology, and to receive feedback that can help to improve it.
Who is organising and funding this study?
This study is being carried out by researchers at Dundalk Institute of Technology and Trinity College Dublin. The funding has been provided by the European Union, under a programme of research called Horizon 2020.
Who can take part?
People aged 65 and older with two of the more following conditions:
- Diabetes
- Chronic Obstructive Pulmonary Disease (COPD), Emphysema, Chronic Bronchitis, or Chronic Asthma
- Chronic Heart Disease, Coronary Artery Disease, or Cardiovascular Disease (e.g., Hypertension, Atherosclerosis, Angina, or Arrhythmia)
- Congestive Heart Failure
What next?
- If you are interested in taking part, we will provide you with more detailed information materials and will fully explain all aspects of the study. We will do this before we ask you to consent to participate.
- Participation is completely voluntary. You can choose not to take part or to withdraw from the study at any time with no negative consequences for you.
Where can I get more information?
If you are interested in taking part in this study or would like more information, you can contact our researchers:
Sarah Tighe or Séamus Harvey, Dundalk Institute of Technology
Jane Murphy, Trinity College Dublin
Phone: 042 937 0296
Email: seuro@dkit.ie or seuro@tcd.ie
Website: www.seuro2020.eu
Living with COPD in the community during the Covid-19 pandemic: an exploration of patients’ perspectives.
16/06/22
Researchers from Trinity College Dublin and associated healthcare providers wish to interview people who are living with COPD and their experiences of living at home in the community during the Covid-19 pandemic.
The study involves taking part in a 30-to-45-minute telephone interview with a member of the research team. Your interview responses will be anonymised and kept strictly confidential.
Inclusion criteria:
- People aged over 18 years of age
- Diagnosed with COPD for at least 18 months or more before the date of the interview.
- Living at home in the community during the Covid-19 pandemic
- Able to speak English (because it is not possible to facilitate an interpreter)
This study has received ethical approval from the TCD Faculty of Health Sciences Ethics Committee on 09th June 2022. COPD Support Ireland are supporting this study.
What should I do if I would like to participate?
Go to https://www.tcd.ie/tcphi/research-collaboration/copd-study/index.php or contact Dr Éadaoin Butler by email (BUTLERAD@tcd.ie) to discuss the study and be sent a copy of the Participant Information Leaflet.
Physical Activity Study – Lorraine Tompkins TCD
14/06/22
Physical activity is critically important for the prevention and management of chronic conditions. As older adults age, physical activity levels tend to decrease, and time spent in sedentary behaviour tends to increase. The importance of understanding what influences physical activity behaviour is key to modifying behaviour and to promoting physical activity. Improving motivation for physical activity is important for increasing physical activity among people who are physically inactive or spend a vast amount of time sedentary. This study is taking place to explore older adults motivation to be physically active, who they are physically active with or alone and where they are physically active such as indoors or outdoors to help understand their physical activity behaviour. The study also aims to understand the best time of day to be physically active. Older adults with two or more chronic conditions (diabetes, cardiovascular disease and/or respiratory disease) may sometimes find it difficult to be physically active and may not feel motivated to do some type of physical activity. Collecting your data in real time will give a better understanding of what influences your physical activity behaviour. This study aims to use an activity tracker ActivPAL and electronic questionnaire via application using your android smartphone to understand older adults with two or more chronic conditions physical activity behaviour. To the best of my knowledge this type of research has not been conducted in Ireland or with older adults with multiple chronic conditions.
For further information on the study please contact Lorraine Tompkins directly on tompkilo@tcd.ie or phone: 085 2839762
Participants’ views on online exercise classes during the Covid-19 Pandemic
26/05/22
You are invited to take part in a research study that aims to determine the views of Irish Physiotherapists and patients towards physiotherapy-led online exercise classes. This survey is being undertaken by Eimear Cronin, a senior Physiotherapist at St. John’s Hospital in Sligo and a PhD candidate at Atlantic Technological University, Sligo under the supervision of Dr Ken Monaghan.
If you are an adult who has participated in a physiotherapy-led online exercise class and is interested in taking part in this study, would you kindly click on this link to complete an anonymous survey:
https://qfreeaccountssjc1.az1.qualtrics.com/jfe/form/SV_5tXPGL3Zevn1lSS
This survey will take only 5 minutes to complete.
Should you have any questions or would like more information in relation to this study, please feel free to contact Eimear at eimearpcronin@gmail.com
Understanding unmet needs today and in the future for strategic development guidance, respiratory patient perspective
26/01/22
EFA – European Federation of Allergy and Airways Diseases Patients’ Associations in association with one of their corporate partners, Roche, is doing some research and they are interested in interviewing patient leaders on future unmet needs on asthma / COPD / respiratory (depending on your expertise) especially when it comes to treatments. The study is described below:
In the interviews we are planning to run in the next several days, we are looking for candidates who could help us understand how future patient unmet needs will evolve over the next 5-10 years, especially thinking about patients’ expectations from drugs or how they want to live their lives better. More specifically, we are planning to ask a number of questions with the key themes below:
- Unmet needs for asthma/COPD Patients now and in 2030
- Ideal therapeutic & non-therapeutic solutions from the patients’ perspective to address remaining unmet needs
- Challenges in addressing asthma/COPD Patients unmet needs
- How Patient – HCP communications influence treatment decisions – what works, what needs to change, what needs to be started?
This will in the end help us identify the areas where Roche can best serve the needs of respiratory patients in the future.
We are currently partnering with a company called Adeptfield to run the interviews. Their project director, @Deepa Patel (+44 20 3432 8216, deepa.patel@adeptfield.com), will soon reach out to you directly. Ideally we would love to run the interviews before the end of next week but we would love to hear your availability as well.
They offer a honorarium of 220 for the person interviewed, and a donation for the organisation of same amount if appropriate. The interview will be in English.
If you are interested please contact the project director Deepa Patel directly on deepa.patel@adeptfield.com
A request from the School of Medicine in NUIG for people living with Conditions such as COPD to speak with their students in a new teaching initiative
05/01/22
The School of Medicine in NUIG are seeking people living with chronic conditions such as COPD, to speak to their students (virtually via Zoom) about their experience of living with COPD day -to -day and also to speak to their experiences of being admitted to hospital due to their condition (if this has ever happened for them). We believe and train our students to keep patients at the centre of their minds, and the centre of any care decisions so ensuring the voices of those living with chronic conditions is included in their learning is very important.
We have completed some similar work in the last 6 months with participants associated with other charities/community groups and the feedback has been very positive. Please note any individuals that would like to get involved, would be re-imbursed for their time as we recognise that their time and input is valuable. Ideally we are seeking somebody living with COPD who has required at least 1 hospital admission due to an acute deterioration of their condition e.g., infection, perhaps someone who has engaged with pulmonary rehab/physio programme or who uses home oxygen.
The initiative is purely for online interaction via Zoom so there would be no need to attend NUIG face to face, especially in light of the current national COVID19 situation.
If you are interested in participating please contact directly:
Dr. Jennifer Yates, MRCPCH
LAB in Professional Development
School of Medicine, NUIG
E-mail: jennifer.yates@nuigalway.ie