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General Instructional Course:

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Erato
Tuesday, November 5, 2019
12:05 PM - 1:35 PM
Erato

Overview

Website for People Living with SCI, as well as Health Care Professionals, to Guide the Selection of Specific SCI Clinical Trials


Speaker

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Prof John Steeves
Professor
UBC & Vancouver Coastal Health

An Interactive, Professionally Curated, Website for People Living with SCI, as well as Health Care Professionals, to Guide the Selection of Specific SCI Clinical Trials (https://SCITrialsFinder.net)

Abstract

Over the past 15 years (Steeves et al. 2004. Spinal Cord, 42: 591), there has been a concerted effort to provide guidelines for the effective translation of preclinical findings to human clinical trials. While much progress has occurred, there are still continuing challenges to define more effective study designs, enhance participant recruitment, and improve accurate study outcome endpoints. Recent 2016 meetings in Canada and Switzerland galvanized an international group of scientists and clinicians, with backing from several SCI Foundations, to update and extend the SCI clinical trial guidelines first published in 2007. A recent series of peer-reviewed papers have been published and a summary of the findings will be presented by Jane Hsieh (15 minutes).

In addition, it was agreed that the current clinicaltrials.gov website is inadequate to the needs of people living with SCI looking to understand and participate in clinical studies appropriate to their injury, as well as most health care professionals charged with advising consumers on options for improving their functional outcomes. Dan Lammertse will recap the recent history and expansion of SCI clinical study efforts. He will also outline the development of more effective formats for understanding those trials listed on clinicaltrials.gov, leading to the SCOPE tables for clinical investigators and the need to develop a website for consumers where the essential information about trial interventions is explained in simple lay-person language (20 minutes).

John Steeves will provide the audience a tour of the new interactive website (SCITrialsFinder.net) outlining the features available to people living with SCI, as well as all Health Care Professionals. SCITrialsFinder.net will enable a person to understand what each trial is about, what are the eligibility criteria for participation, and what is required of a participant during the study. He will explain the curation process and interactive algorithms that enable a person living with SCI to directly review only those studies that are appropriate to their interests, their level and severity of SCI, as well as the time since their injury. The SCITrialsFinder.net website also facilitates easy (one click) application to the study investigators of any trial that an individual might qualify for participation (25 minutes).

Linda Jones will then lead the audience in a discussion of the SCITrialsFinder.net website to understand any difficulties that might occur while navigating the website, as well as how it might be best disseminated and developed further. Feedback from all instructional course participants is important for the effective development of this tool. (30 minutes).

Biography

Jane Hsieh, M.Sc. has over 30 years in spinal cord injury (SCI) research through affiliations in academia, industry, and non-profit organizations. Her current role as Executive Director of the Accelerated Translational Program of Wings for Life includes managing a portfolio requiring up to date knowledge of SCI clinical trials from both scientific and operational perspectives. Ms. Hsieh will provide the opening introduction to this Instructional Course Dr. Daniel Lammertse is an Emeritus Clinical Scientist at Craig Hospital in Englewood, Colorado, USA and Clinical Professor of Physical Medicine & Rehabilitation at the University of Colorado School of Medicine. Dr. Lammertse has extensive experience as an investigator and consultant to industry-sponsored clinical trials in SCI. Dr. Lammertse will review the history of resource materials for restorative clinical trials in SCI which have set the stage for the introduction of the interactive web-based resource SCITrialsFinder.net. Dr. Lammertse will provide the history to the development of the interactive website Prof. John Steeves bio is an Emeritus Professor at UBC and the founding director of ICORD. He also currently cochairs SCOPE. Prof. Steeves will provide the audience a tour of the interactive, professionally curated website outlining the features available to people living with SCI, as well as all health care professionals. The website will enable understanding (in simple language) of what each trial is about, what are the criteria for participation, and what is required of an eligible participant during the study. Prof. Steeves will explain the interactive algorithms that enables a person living with SCI to directly apply to only those studies that are appropriate to their interests, their level and severity of SCI, as well as the time since their injury. Ms. Linda Jones is a PhD candidate with extensive experience in SCI clinical trials. Ms. Jones will lead the audience discussion session.
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