Patient and parent oriented tools to assess health-related quality of life, activity of daily living and caregiver burden in SMA. Rome, 13 July 2019

Collaborators, Affiliations

all participants and the SMA PROM working group:
Laura Antonaci⁶, Matt Civitello⁷, Giorgia Coratti⁶, Mencia de Lemus⁸, Roberto de Sanctis⁶, Marcus Droege Avexis⁹, Tina Duong¹⁰, Richard Finkel⁷, Anna Lia Frongia⁶, Ksenija Gorni Roche¹¹, Chad Heatwole¹², Nicole Gusset¹³, Erik Henricson¹⁴, Anna Mayhew¹⁵, Chiara Marchesi¹¹, Eugenio Mercuri⁶, Sonia Messina¹⁶, Jacqueline Montes¹⁷, Francesco Muntoni¹⁸, Amy Pasternak¹⁹, Astrid Pechmann²⁰, Maria Carmela Pera⁶, Ivana Rubino²¹, Valeria Sansone²², Mary Schroth²³, Dylan Trundell¹¹, Volker Straub¹⁵

¹ Centro Clinico Nemo, Fondazione Policlinico Universitario A. Gemelli IRCSS, Rome, Italy; Pediatric Neurology Unit, Catholic University, Largo Gemelli 8, 00168 Rome, Italy. Electronic address: eugeniomaria.mercuri@unicatt.it.
² Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy.
³ Department of Rehabilitation and Regenerative Medicine, Columbia University Irving Medical Center, New York, United States; Department of Neurology, Columbia University Irving Medical Center, New York, United States.
⁴ Dubowitz Neuromuscular Centre, UCL Institute of Child Health & Great Ormond Street Hospital, London, United Kingdom; NIHR Great Ormond Street Hospital Biomedical Research Centre, London, United Kingdom.
⁵ Neurorehabilitation Unit, University of Milan, Centro Clinico Nemo, Niguarda Hospital, Milano, Italy.
⁶ Rome, Italy.
⁷ Orlando, USA.
⁸ Madrid, Spain.
⁹ Chicago, USA.
¹⁰ Stanford, USA.
¹¹ Basel, Switzerland.
¹² Rochester, USA.
¹³ Heimberg, Switzerland.
¹⁴ California, USA.
¹⁵ Newcastle, USA.
¹⁶ Messina, Italy.
¹⁷ New York, USA.
¹⁸ London, UK.
¹⁹ Boston, USA.
²⁰ Germany.
²¹ Cambridge, USA.
²² Milan, Italy.
²³ Illinois, USA.

Free article

Eugenio Mercuri et al. Neuromuscul Disord. 2020 May.

Free article

. 2020 May;30(5):431-436.

doi: 10.1016/j.nmd.2020.02.019. Epub 2020 Mar 7.

all participants and the SMA PROM working group:
Laura Antonaci⁶, Matt Civitello⁷, Giorgia Coratti⁶, Mencia de Lemus⁸, Roberto de Sanctis⁶, Marcus Droege Avexis⁹, Tina Duong¹⁰, Richard Finkel⁷, Anna Lia Frongia⁶, Ksenija Gorni Roche¹¹, Chad Heatwole¹², Nicole Gusset¹³, Erik Henricson¹⁴, Anna Mayhew¹⁵, Chiara Marchesi¹¹, Eugenio Mercuri⁶, Sonia Messina¹⁶, Jacqueline Montes¹⁷, Francesco Muntoni¹⁸, Amy Pasternak¹⁹, Astrid Pechmann²⁰, Maria Carmela Pera⁶, Ivana Rubino²¹, Valeria Sansone²², Mary Schroth²³, Dylan Trundell¹¹, Volker Straub¹⁵

¹ Centro Clinico Nemo, Fondazione Policlinico Universitario A. Gemelli IRCSS, Rome, Italy; Pediatric Neurology Unit, Catholic University, Largo Gemelli 8, 00168 Rome, Italy. Electronic address: eugeniomaria.mercuri@unicatt.it.
² Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy.
³ Department of Rehabilitation and Regenerative Medicine, Columbia University Irving Medical Center, New York, United States; Department of Neurology, Columbia University Irving Medical Center, New York, United States.
⁴ Dubowitz Neuromuscular Centre, UCL Institute of Child Health & Great Ormond Street Hospital, London, United Kingdom; NIHR Great Ormond Street Hospital Biomedical Research Centre, London, United Kingdom.
⁵ Neurorehabilitation Unit, University of Milan, Centro Clinico Nemo, Niguarda Hospital, Milano, Italy.
⁶ Rome, Italy.
⁷ Orlando, USA.
⁸ Madrid, Spain.
⁹ Chicago, USA.
¹⁰ Stanford, USA.
¹¹ Basel, Switzerland.
¹² Rochester, USA.
¹³ Heimberg, Switzerland.
¹⁴ California, USA.
¹⁵ Newcastle, USA.
¹⁶ Messina, Italy.
¹⁷ New York, USA.
¹⁸ London, UK.
¹⁹ Boston, USA.
²⁰ Germany.
²¹ Cambridge, USA.
²² Milan, Italy.
²³ Illinois, USA.

No abstract available

Keywords: Activity of daily living; Caregiver burden; Health related quality of life; Quality of life; Spinal muscular atrophy.

Publication types