PAE News
Patient Summit

The Grünenthal first Patient Summit took place at the Steigenberger  Hotel in Amsterdam  on the 17-18 March.

The  first  Patient  Summit  brought  together  patient  advocates,  clinicians  and
Grünenthal  researchers  to  define  ways  to  bring  the  patient  voice  to  the   research  and  development  process.  The  meeting  focused  on  identifying  joint  initiatives  and  partnerships  to  further  our  understanding  of  three chronic  pain  areas  (vulvodynia,  bladder  pain,  and  stump/amputee  pain).  The  meeting  programme  and  format  were  guided  by  a  patient  steering  committee  and  included  an  overview  of  the  research  and  development  process,  and  three  workshops  that  were  specific  to  the  disease areas.

The  workshops of the event  include discussions on:
•   Vulvodynia:
o   Continue  development  of  a  new  PRO  using  advice  from  the  steering
•   Bladder  pain:
o   Define  and  standardise  pain  descriptors  to  improve  diagnosis
•   Stump/amputee  pain:
o   Address  the  communication  challenges  throughout  the  patient  journey,
and  explore  the  need  for  patient  community  website

graphic illustration
The  key  aims  and  discussions  of  the  meeting,  as  well  as  the  desired outcomes,  were  also  captured  by  live   illustrators.

The conclusions of the summit highlighted Grünenthal’s commitment to continue involving patients in their research and development processes, concretising the ideas and outcomes of the workshops and debates; this means including in their processes the patient’s view on the complexity of treatment and the challenge of a diagnosis that is common to all cases presented during the event, but also exploring  other  aspects  of  early  research  and  development  such  as  the  design  of  protocols  for  clinical  trials.

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