Some time ago, SMA Europe collected the EUPESMA dataset, which focused on patients’ treatment expectations and quality of life. We are currently working on a project where we would like to get more insight in the clinical perspective on the quality of life of SMA patients. And for this, we want to ask your help.
You can enter the survey through this link: https://www.surveymonkey.com/r/MJG57M3
If you have any questions regarding this survey, please contact SMA Europe via Carolina Pachecoy (firstname.lastname@example.org).
Thank you very much for willing to participate in our survey, we appreciate it a lot! The deadline for our data collection will be March 1, 2021.
If you have other colleagues (neurologists who treat pediatric or adult patients – not affiliated with KU Leuven, Belgium) who might be willing to participate in this survey, please forward this email to them – thank you!
SMA Europe is a non-profit umbrella organisation, founded in 2006, which includes Spinal Muscular Atrophy (SMA) patient and research organisations from across Europe. SMA Europe campaigns to improve the quality of life of people who live with SMA, to bring effective therapies to patients in a timely and sustainable way and encourages optimal patient care.
Dr. Nicole Gusset PhD
Acting President SMA Europe
Vanessa Christie-Brown, 3 Glebe Fold, Chipping Campden, Glos GL55 6JP, UK
Im Moos 4, 79112 Freiburg, Germany
Published on 25 February 2021.