Trials and studies in rare and pediatric diseases typically have little or no previous track record in clinical research, so feedback from children, parents and patients is especially important
TORONTO (PRWEB)
August 24, 2022
The phrase “patient-centricity” can mean many things but at heart it means designing a treatment, clinical trial, or other healthcare solution based on what the patient or their family needs or wants. For clinical researchers, it means making the clinical trial process the easiest and best it can be, from the patient or family’s perspective. A patient-centric approach should start at the time a study or trial is devised. Clinical trial design is one of the most important places to involve the patient voice. For pediatric rare disease natural history studies or therapeutic trials, it is especially important.
This is because trials and studies in rare and pediatric diseases typically have little or no previous track record in clinical research, so feedback from children, parents and patients is especially important, as they know more about the disease than anyone else.
Possible options include hosting patient groups, working with patient advocacy organizations, or analysing real-world evidence (assuming there is some), so that trial eligibility criteria reflect the patient population.
It is also important to realize that a pediatric research patient really needs family. Thought must be given toward the accommodation of the patient, parent(s) and siblings, even for a study of short duration. It is recommended to incorporate patient/family reimbursement into the study contract as well as ensuring participating site(s) have processes/infrastructure to minimize family burden by supporting a “family” during clinic visits.
Register to learn about undertaking patient-centric approaches in pediatric rare disease studies and clinical trials.
Join experts from TFS HealthScience, Scott Schliebner, Senior Vice President, Clinical Development Services Head of Rare Diseases and Orphan Drugs; and Alison Sampson, PhD, Head of Rare Diseases and Orphan Drugs, Europe, for the live webinar on Wednesday, September 14, 2022, at 11am EDT (4pm BST).
For more information, or to register for this event, visit Pediatric Rare Disease Studies: Patient-Centric Approaches.
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