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DESCRIPTION:\n\n\n\n\n\n\n\n\n\n\n\nJoin our webinar!How to Make Your Rare
  Disease Trials More Patient and Site-Centric\n\nThursday March 9\, 2023 
 11:00am EDT | 4:00pm BST | 5:00pm CEST&nbsp\;\n\n\n\n\n\n&nbsp\;\n\n\n\n\
 n\n\n\n\n\nRegister now \n\n\n\n\n\n\n\n\n\n&nbsp\;\n\n\n\n\n\nOverview\n
 \nRare disease patients and caregivers often face numerous obstacles when
  participating in clinical trials\, and these obstacles are usually the r
 esult of a 'one size fits all' approach. In recent years\, industry profe
 ssionals are increasingly deploying innovative approaches to both help id
 entify rare disease patients and enable them to actively engage and parti
 cipate in clinical research.\n\n&nbsp\;\n\nTo help gain further insight i
 nto the perspective of rare disease patients and investigative sites - as
  well as enhance their experience participating in clinical research - Ad
 vanced Clinical partnered with Know Rare\, a company dedicated to connect
 ing patients with clinical research. The partnership conducted a global s
 urvey to capture the opinions of rare disease patients\, caregivers\, and
  health care professionals (HCP) regarding how to best implement the voic
 e of the patient into rare disease trials.\n\n&nbsp\;\n\nIn this panel di
 scussion\, Rebecca Starkie\, Senior Global Patient Engagement Director at
  Advanced Clinical will moderate a panel discussion with industry experts
  around these survey results\, offering insights into effective patient e
 ngagement strategies and how new approaches can add value for sponsors\, 
 site staff\, regulators and - ultimately - patients in need of new treatm
 ents and care regimes.\n\nKey Learning Objectives:\n\n\nWhat are the gaps
  faced by HCP providers in clinical research and recruitment\, and how ar
 e HCPs made aware of clinical research studies as a potential treatment o
 ption for rare disease patients?\nDo patients and caregivers in the rare 
 disease community have an interest in clinical research and do they wish 
 to participate? Do they feel supported?\nHow can we integrate diversity e
 fforts in rare disease clinical research to ensure the optimal participat
 ion pool?\nWhat are some reported obstacles in converting a patient and c
 aregiver from a 'practice patient' into a 'clinical trial patient'?\nWhat
  are some real-life experiences of patients and caregivers who have parti
 cipated in clinical research?\n\nPresenters:\n\n\nNina Wachsman | Founder
  &amp\; President\, Know Rare\nDr. Pushpa Narayanaswami | Neuromuscular N
 eurologist\, Associate Professor of Neurology and Vice-Chair of Clinical 
 Operations\, Department of Neurology Associate Professor of Neurology at 
 Harvard Medical School Beth Israel Deaconess Medical Center\, Boston\, MA
 \nMaria Joshi | Former Director\, Clinical Operations\, Arena Pharmaceuti
 cals Inc\n\nModerator:\n\n\nRebecca Starkie | Senior Global Patient Engag
 ement Director\, Advanced Clinical\n\n\n\n\n\n&nbsp\;\n\n\n\n\n\n\n\n\n\n
 Register now \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n
DTEND;VALUE=DATE:20230309
DTSTAMP:20260512T213554Z
DTSTART;VALUE=DATE:20230309
LOCATION:\,
SEQUENCE:0
SUMMARY:\n\n\n\n\n\n\n\n\n\n\n\nJoin our webinar!How to Make Your Rare Dis
 ease Trials More Patient and Site-Centric\nThursday March 9\, 2023 11:00a
 m EDT | 4...
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