Study Information Leaflet and Eligibility

1.  Title of Study
A survey of healthcare professionals on the measurement of physical functioning in Amyotrophic Lateral Sclerosis (ALS) / Motor Neurone Disease (MND) and attitudes to development of technology based measurement and monitoring solutions

Principal Investigator: Dr. Deirdre Murray PhD (Physiotherapy), Research Fellow, Academic Unit of Neurology, Trinity College Dublin. Dmurray1@tcd.ie

Co-investigators:
Dr. Dara Meldrum PhD (Physiotherapy), Research Fellow, Academic Unit of Neurology, Trinity College Dublin. meldrumd@tcd.ie
Prof Orla Hardiman, Professor of Neurology and Head of Academic Unit of Neurology, Trinity College Dublin.

2. Introduction
Emerging technologies provide opportunities for development of novel solutions for assessment and remote monitoring of physical functioning in people with Amyotrophic Lateral Sclerosis (ALS) / Motor Neurone Disease (MND). We are interested in the perspectives of healthcare professionals regarding the potential of new technologies to replace or augment current assessment methods. We would like to examine current practice in clinical and research settings and the perceived advantages and disadvantages of current assessment methods. Finally we are interested in the attitudes of healthcare professionals to the potential role for technology based solutions. To achieve this we are conducting an online survey of healthcare professionals working with ALS/MND internationally.

3. Procedures
This study is inviting healthcare professionals working with ALS/MND to participate.  

The survey will take between 15 and 20 minutes. It includes demographic and service related questions as well as asking specific questions about attitudes to outcome measurement and the role of technology. Finally we ask you to complete a standardised questionnaire developed by Gagnon for evaluation of healthcare professionals’ acceptance of telemonitoring.

4. Benefits
This study will provide a knowledge base with regard to the attitudes of healthcare professionals to outcome measurement and the potential role of technology in ALS/MND. We plan to disseminate the findings at the ALS/MND Syposium, other relevant conferences and in an international peer reviewed journal.

5. Risks:  There are no risks associated. 

6. Exclusion from Participation: People who do not work as a healthcare professional with people with ALS/MND.

 7. Confidentiality: All data is completely anonymised. Your IP address and email address will not be collected. No individual will be identified in the analysis or publication of the findings.  

8. Insurance: This study is covered by insurance policies organised by Trinity College Dublin.

9. Voluntary Participation: This study is entirely voluntary. There are no penalties for not participating.  Your consent to participation is presumed by your taking part.

10. Stopping the Study:  You may stop the study at any time.

11. Permission: The study has School of Medicine Research Ethics Committee approval.

12. Further Information: For further information please contact Dr. Deirdre Murray at dmurray1@tcd.ie

Thank you for taking some time to consider completion of the survey. We wish to clarify that you are among the targeted respondents.

Question Title

* 1. Do you work as a healthcare professional with people with Motor Neurone Disease (MND) / Amyotrophic Lateral Sclerosis (ALS)?

0 of 60 answered
 

T