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Facilitating Rare Disease Patient Participation in Clinical Trials
Session Chair(s)
Maureen Smith
Patient Advocate / Secretary
Canadian Organization For Rare Disorders (CORD), Canada
In rare disease trials, patients are difficult to find and also hard to retain. Patients may be located far from the investigative site, too debilitated to travel, or may not be able to come to the investigative site for the numerous visits required per the protocol. This symposium will present three innovative initiatives to facilitate rare disease patient participation in clinical trials. It will provide attendees with insights that will have positive impacts on recruitment, study completion and patient satisfaction. The initiatives include the use of mobile nursing in rare and pediatric studies and the challenges; optimizing the use of home health care providers for patient visits and travel agencies for patient travel to the investigative site; and rare disease Patient Service Centers - creating outstanding patient engagement via a holistic approach.
Learning Objective : Describe the role of mobile nursing within a clinical study and its delivery within an investigator site-led project; Optimize the use of home health care providers for patient visits and travel agencies for patient travel to the investigative site; Discuss challenges, best practices and risk mitigation; Explain the complexities of establishing a Patient Service Center for rare disease patient care.
Speaker(s)
The Use of Mobile Nursing in Rare and Pediatric Disease Studies
John M Illingworth, MS
ResearchNurses.Co, United Kingdom
Managing Director
Managing Home Health Care Visits and Patient Travel in Rare Disease Trials
Kristi Clark, MBA
Agility Clinical Inc., United States
Vice President, Project Management and Clinical Operations
Rare Disease Patient Service Centers: Creating Outstanding Patient Engagement Via a Holistic Approach
Thomas Rudolf Lembck, MBA
Orphan Drug Solutions, United States
Co-Founder
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