Dear neurologist,

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.

  1. have developed a survey and we want to ask you to participate in our survey. The language of the survey is English and completing this survey will take approximately five to ten minutes of your time.
  2. answers will help us to better understand how clinicians perceive the quality of life of SMA patients, and which factors or activities have the strongest impact on quality of life.

You can enter the survey through this link: https://www.surveymonkey.com/r/MJG57M3

  1. study has received approval from the Social and Societal Ethics Committee (SMEC) of KU Leuven, Belgium (nr. G-2020-2820-R2(MAR)).
  1. thank you, we will have a lottery for two free entries to the next SMA Europe scientific conference among the participants of this survey. The conference will be held in February 2022 in Barcelona and you can find more information on the conference here https://www.sma-europe.eu/events/sma-events/. Instructions on how to enter the lottery will be given in the survey.

If you have any questions regarding this survey, please contact SMA Europe via Carolina Pachecoy (survey@sma-europe.eu).

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

Secretariat address

Vanessa Christie-Brown, 3 Glebe Fold, Chipping Campden, Glos GL55 6JP, UK

Registered address

Im Moos 4, 79112 Freiburg, Germany

www.sma-europe.eu

Published on 25 February 2021.

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