14 July 2017
The MPS Society has just been informed by the PI Dr Suresh Vijay from Birmingham Children’s Hospital that the NGLU clinical trials for MPSIIIB have been stopped with immediate effect.
At this time neither the CRO, PPD, MPS Commercial or PACT team who organise logistics and reimbursements have been made aware of this situation.
Equally, neither the MPS Society or MPS Commercial have heard from Alexion.
In discussion with Dr Vijay we agreed to await further information which we expect to receive by the end of the day.
In the meantime we can only imagine the emotions the five families on the two studies must be feeling. The MPS Advocacy team is aware of the situation and very happy to support you at this difficult time.