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Neurological Sciences

, Volume 40, Issue 2, pp 327–332 | Cite as

Intrathecal nusinersen treatment for SMA in a dedicated neuromuscular clinic: an example of multidisciplinary and integrated care

  • Valeria A SansoneEmail author
  • Emilio Albamonte
  • Francesca Salmin
  • Jacopo Casiraghi
  • Alice Pirola
  • Massimo Bettinelli
  • Fabrizio Rao
  • Luca Mancini
  • Nicola Tovaglieri
  • Fausto Fedeli
  • Paolo Stoia
  • Maurizio Heinen
  • Valeria Cozzi
  • Elena Carraro
  • Christian Lunetta
  • Alessandra Di Bari
  • Eugenio Mercuri
  • the Italian EAP working group
Original Article

Abstract

Nusinsersen is now available in Italy for all SMA types. We describe the experience with intrathecal treatment with nusinersen in 50 patients with SMA at the NEMO Center (NEuroMuscular Omniservice Clinical Center) in Milan, a neuromuscular patient-centered clinic hosted within Niguarda Hospital, a National Public General Hospital. Our results indicate that the pathway of care described outweighs the burden due to the repeated intrathecal injections. Irrespective of age and severity, the treatment is feasible, accessible, and replicable provided that there is a multidisciplinary team having experience and training in SMA.

Keywords

Spinal muscular atrophy Nusinersen Multidisciplinary Integrated care Spinraza 

Notes

Acknowledgements

We thank all patients and families for their trust and compliance to the treatment and standards of care. We thank all the NEMO staff involved in the care of these patients and their families. We wish to acknowledge the contribution of Professor Costantino De Giacomo, Head of the Pediatric Department in Niguarda Hospital, for supporting the collaboration between the Pediatric Department and the NEMO Center and for providing space and facilities for the intrathecal procedures. We are particularly grateful to the Anesthesiology and Pediatric team and to the Nurses from Niguarda Hospital with whom the NEMO staff is actively collaborating in the treatment program. We also acknowledge the Pharmacy team for support during the EAP.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

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Copyright information

© Springer-Verlag Italia S.r.l., part of Springer Nature 2018

Authors and Affiliations

  • Valeria A Sansone
    • 1
    Email author
  • Emilio Albamonte
    • 1
  • Francesca Salmin
    • 1
  • Jacopo Casiraghi
    • 1
  • Alice Pirola
    • 1
  • Massimo Bettinelli
    • 1
  • Fabrizio Rao
    • 1
  • Luca Mancini
    • 2
  • Nicola Tovaglieri
    • 2
  • Fausto Fedeli
    • 2
  • Paolo Stoia
    • 2
  • Maurizio Heinen
    • 2
  • Valeria Cozzi
    • 2
  • Elena Carraro
    • 1
  • Christian Lunetta
    • 1
  • Alessandra Di Bari
    • 1
  • Eugenio Mercuri
    • 3
  • the Italian EAP working group
  1. 1.Neurorehabilitation Unit, the NEMO Clinical Center in MilanUniversity of MilanMilanItaly
  2. 2.Dept of Pediatrics, ASST NiguardaMilanItaly
  3. 3.Child Neurology Department, the NEMO Clinical CenterPoliclinico Universitario “A. Gemelli”RomeItaly

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