From the European Lung Foundation (ELF):
Your opinions are wanted.
HOW DO YOU FEEL ABOUT HOME MECHANICAL VENTILATION?
Do you, or does someone you know, use a ventilator at home to help you breathe? We want to understand how people feel about the equipment they use, and the support they receive.
The information from the survey will help healthcare professionals, working with ERS, to write new high-quality standards for doctors to use when prescribing and monitoring home ventilation. With your help, we can ensure that the new guidelines reflect what matters to the people using the equipment.
The survey will take 10 minutes to complete and is available online in six languages. If you are a patient organisation with members who use home ventilation, please send them the survey details.
Complete the survey online in:
The survey will be open until December 2014. If you are interested in helping to translate the survey into other languages or for any more information, contact Sarah Masefield.
Participants Wanted: Live in the DC or Johnstown, Pennsylvania area? Check out this research opportunity funded by the Department of Defense.
Study Title: Investigation of Cognitive Function Status in Polio Survivors with and without Post-Polio Syndrome
A research study of polio survivors is being conducted by Dr. Kimbra Kenney (DC area) and Dr. William DeMayo ( Johnstown , Pennsylvania area) and colleagues to investigate the problems involving mental fatigue that may affect concentration, memory, attention, etc. Qualified individuals will receive at no cost, the following study related items:
- Physical and Neurological Exams
- Laboratory Testing
- Neuropsychological Testing
Study Description: This study’s objective is to assess if polio survivors with or without PPS are having significant problems affecting their capability to think clearly, to concentrate, pay attention, register and store memory, etc.
Time Requirements: The study will last a total of 2-4 weeks and required 2 visits to the study center that enrolled you.
You may participate if: You are a polio survivor and you are 18 or older.
Locations: Uniformed Services University of the Health Sciences (USUHS), Bethesda, Maryland, and Conemaugh Health System, Johnstown, Pennsylvania.
DC area: Please call the study Nurse Coordinator at 301-984-7755.
Johnstown area: Please call the Nurse Coordinator, Jan Goodard, RN, 814-269-5288.