Searchable abstracts of presentations at key conferences on calcified tissues

ba0007p69 | (1) | ICCBH2019

Experience of implementation and monitoring of burosumab treatment in a multi-disciplinary setting

Marr Caroline , Greenacre Gemma , Arundel Paul

Objective: In 2018 we started treating children with X-linked hypophosphataemic rickets (XLH) with burosumab, initially as part of an industry-sponsored early access program. We present what we did, the barriers to implementation and broader lessons for the introduction of treatments for rare bone diseases in the future.Method: Firstly, we identified suitable patients under the age of 18 years with XLH. For convenience we arranged dedicated clinics in wh...

ba0007p211 | (1) | ICCBH2019

Value of osteogenesis imperfecta clinical nurse specialists to families and consultants across five UK centres

Heathfield Mark , Tucker Ian , Sahota Jaskiran , Rayner Lauren , Greenacre Gemma

Objectives: To ascertain if parents and consultants at secondary care level hospitals felt there were areas that the Clinical Nurse Specialists (CNS), working with children and families with Osteogenesis Imperfecta (OI) could improve upon within their service, and to gain feedback on the current service provided.Methods: A SurveyMonkey© questionnaire was created through the audit team at Great Ormond Street Hospital and the Paediatric Ost...

ba0007p137 | (1) | ICCBH2019

Reversion to pamidronate after switch to zoledronic acid in children with bone disease

Peacock Amanda , Bishop Nick , Platt Carolyn , Greenacre Gemma , Crossland C , Lee E , Arundel Paul

Objectives: From late 2015 a new protocol for zoledronic acid was adopted in our centre. This led to many children changing from pamidronate (PAM) to zoledronic acid (ZA) treatment. In a minority of cases the children and/or their families felt strongly that they wanted to change back to PAM. We present the characteristics of that minority and how bone turnover markers (BTMs) and bone mineral densities (BMD) changed whilst on ZA.Method: From Nov 2016 to ...