What is the Role of the Managed Access Oversight Committee (MAOC)?

The MAOC is responsible for monitoring the implementation of the MAA and recommending actions to support its operation.

This may include:

Monitoring the progress of data collection and analyses as described in the MAA and data specification
Reviewing enrolment to and continuation in the MAA, including the number of patients who have discontinued treatment
Agreeing communications (including for patients, clinicians, service providers)
Considering proposed amendments to the MAA (which would be subject to renegotiation by NHS England and the Company)
Receiving updates from the NHS England Clinical Panel on patient referrals and prioritisation relevant to the data collection agreement

Membership is:

NICE Managed Access Associate Director (Chair)
NICE Technical Advisor or Analyst
NICE Data Collection Manager (Co-chair)
A representative from NHS England (who will also provide updates on behalf of the clinical panel)
Two paediatric clinical experts in the treatment of children with spinal muscular atrophy
One clinical expert in the treatment of adults with spinal muscular atrophy
One physiotherapist involved in the treatment of spinal muscular atrophy
Spinal Muscular Atrophy UK representative (patient organisation)
TreatSMA representative (patient organisation)
Muscular Dystrophy UK representative (patient organisation)
SMA-REACH Academic Lead
SMA-REACH (Global) Trial ManagerTwo standing representatives from Biogen (company) and 1 substitute representative.