I have signed up and encourage any SA patient or caregiver to volunteer. AASM is asking for patient/caregiver perspective. It is worth participating.
The American Academy of Sleep Medicine (AASM) is currently working to develop a new clinical practice guideline on the diagnosis and management of sleep-disordered breathing in inpatient settings. We are reaching out to see if you would be interested in contributing to this project as a volunteer patient stakeholder.
In this role, the participant would serve as a representative for the average adult inpatient with sleep-disordered breathing and share that perspective with the team of physicians who are working on the new guideline. Your insight and perspective will help our team ensure they create a transparent and trustworthy guideline that benefits physicians and patients in the management of sleep-disordered breathing in inpatient settings.
As a patient stakeholder, you will be contacted at two points during the course of this project to provide feedback. The first will be in the next few weeks to complete a survey on which symptoms and side effects are most important when managing sleep-disordered breathing. This should take approximately 15-20 minutes to complete. You’ll be contacted a second time, during the public comment period, to provide feedback on the completed guideline document.
If you are interested in participating as a patient stakeholder, please contact Gerard Carandang, MS, Clinical Guidelines & Research Project Manager, at firstname.lastname@example.org by March 31, 2021.
I second this request.
The Patient Centered Outcomes Research Institute (PCORI ) has launched a free online training for those who are new to health research and want to learn more about the research process. Research Fundamentals is a self-paced, on-demand training that uses plain language to describe patient-centered outcomes research and can help everyone, regardless of experience, engage and contribute with confidence. The modular format and downloadable glossary will help users quickly and easily apply what they’ve learned.
Please find this excellent material at
EXPLORE the LIVE SITE at https://www.apneapartners.org/
Anyone can JOIN the ASAP community at https://www.apneapartners.org/join-the-community
Caregivers and Patients can LEARN more about SLEEP APNEA at https://www.apneapartners.org/patients
Please consider DONATING to ASAP by clicking on https://www.apneapartners.org/donate
Have you thought to try this
Phillips Respironics Dreamwear CPAP Nasal Mask
It is what I use - and replacement parts can be bought on Amazon easily.
I have a big head but found that the Medium worked for me.
and ... you can replace the nasal section for $10 to12! and you get that part on Amazon. I use a Medium (the nasal piece is sized)
I buy replacement parts when they wear out - piecemeal - and find that works great - for me.
The intake being on top of the harness is almost as much a reason for its comfort as the softness of the part under the nose.
You are not fighting the hose when you are wearing this product. It is 'overhead'
I used to use the pillows but then was offered a trial of this and I never looked back
Philips Respironics DreamWear Nasal Cushion (Medium Wide)
I put my unit in the sun on our sun-porch for the day and that seemed to work.