Institution

OHSU

Program/Major

School of Medicine

Degree

MD, MCR

Presentation Type

Presentation

Room Location

Smith Memorial Student Union, Room 294

Start Date

April 2019

End Date

April 2019

Abstract

Introduction: Rare diseases affect nearly 400 million individuals worldwide. The geographic density of any single disease, however, can prohibit access to care and research efforts. Telemedicine has improved access barriers in the clinical setting, though its application in rare disease trials has not been evaluated.

Objective: To assess the impact on access to care of videoconferencing in a rare disease clinical trial.

Materials and Methods: Preliminary analysis was performed on the first five participants to complete our ongoing trial (NCT03485976) evaluating the efficacy of ixekizumab for the treatment of pityriasis rubra pilaris. Participants were required to travel to Oregon Health & Science University (OHSU) for their enrollment and 24-week endpoint visits. All remaining visits were completed by remote videoconferencing. Questionnaires were administered to patients and providers following study visits and graded on true/false or 5-point Likert scales.

Results: Mean flight distance between participant hometown and OHSU was 1787 miles (range 207-2436). All participants (5/5) reported having the necessary equipment to complete videoconferencing visits prior to learning about the study. All participants (5/5) were strongly satisfied with the quality, safety, and privacy of their remote visits at the 24-week exit survey. Providers reported being unable to perform an accurate full-body skin exam during 4/15 visits, though did not report any instances of compromised patient safety (0/15). One participant reported they would not have enrolled had all visits required travel to OHSU.

Conclusions: Inclusion of remote videoconferencing in clinical trials may improve recruitment and access to care for individuals with rare disease.

Comments/Notes

Either poster or oral would be acceptable

Share

COinS
 
Apr 3rd, 2:47 PM Apr 3rd, 2:59 PM

Improving Access to Rare Disease Clinical Trials Through Telemedicine

Smith Memorial Student Union, Room 294

Introduction: Rare diseases affect nearly 400 million individuals worldwide. The geographic density of any single disease, however, can prohibit access to care and research efforts. Telemedicine has improved access barriers in the clinical setting, though its application in rare disease trials has not been evaluated.

Objective: To assess the impact on access to care of videoconferencing in a rare disease clinical trial.

Materials and Methods: Preliminary analysis was performed on the first five participants to complete our ongoing trial (NCT03485976) evaluating the efficacy of ixekizumab for the treatment of pityriasis rubra pilaris. Participants were required to travel to Oregon Health & Science University (OHSU) for their enrollment and 24-week endpoint visits. All remaining visits were completed by remote videoconferencing. Questionnaires were administered to patients and providers following study visits and graded on true/false or 5-point Likert scales.

Results: Mean flight distance between participant hometown and OHSU was 1787 miles (range 207-2436). All participants (5/5) reported having the necessary equipment to complete videoconferencing visits prior to learning about the study. All participants (5/5) were strongly satisfied with the quality, safety, and privacy of their remote visits at the 24-week exit survey. Providers reported being unable to perform an accurate full-body skin exam during 4/15 visits, though did not report any instances of compromised patient safety (0/15). One participant reported they would not have enrolled had all visits required travel to OHSU.

Conclusions: Inclusion of remote videoconferencing in clinical trials may improve recruitment and access to care for individuals with rare disease.