At the Fondazione Cà Granda IRCCS Ospedale Maggiore Policlinico in Milan, Italy, Cristina Eller-Vainicher and Giovanna Mantovani are currently conducting an international survey to investigate current practices, access disparaties, and regulatory differences regarding Burosumab treatment in X-linked hypophosphatemia (XLH) with particular focus on:

  • Challenges in the transition phase from paediatric to adult care
  • Access and treatment continuity for patients over the age of 65
This initiative is especially relevant as, in Italy, adult access to Burosumab is limited: after the age of 18, treatment is only reimbursed in the presence of an active fracture or pseudofracture, and after the age of 65, its use is off-label.
These restrictions lead to significant care inequities. Sharing international experiences is essential to advocate for fair, non-discriminatory access across Europe and to improve patients’ quality of life.
We would be extremely grateful for your contribution by completing a short, structured questionnaire (approx. 10 minutes).
Your input will help identify clinical gaps and support international advocacy for more equitable access to care.
Data will be anonymized and used solely for scientific purposes.

Survey summary

Survey Survey on Global Perspectives on XLH: access and Challenges in Adult Care with a Focus on Transition and Patients Over 65
Target Clinicians
Survey Conribute to the survey here
Language
 English

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