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Clinical Trial Knowledge Among Adults with Inherited Retinal Dystrophy (IRD)

Larson, Alexandra (2024) Clinical Trial Knowledge Among Adults with Inherited Retinal Dystrophy (IRD). Master's Thesis, University of Pittsburgh. (Unpublished)

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Background: Treatments for inherited retinal dystrophy (IRD) are quickly becoming a reality due to tremendous advances in ocular gene therapy research. Patient misconceptions about clinical trials can act as a barrier to study participation enrollment.

Purpose: This study aims to identify potential clinical trial knowledge gaps among adults with IRD as well as patient preferences for receiving new information. The hope is that this information can be used to develop patient educational intervention and promote timely, informed decision-making.

Methods: The Clinical Trial HEalth Knowledge and Beliefs Scale (CHEKS) was distributed via email to members of the My Retina Tracker registry, an international research database of individuals and families affected by IRD. The study team developed an additional 4 items to assess clinical trial knowledge that is particularly relevant to ocular gene therapies (CHEKS+). In addition to the CHEKS tool, the survey included demographic questions, sources of clinical trial information, and preference for receiving educational material.

Results: For 202 survey responses, the mean CHEKS+ score was 94.5 ±13.6 (out of a possible total 116). Participants who reported that they had a good understanding of clinical trials scored higher (101.4 +11.3) than those who did not self-perceive strong understanding (90.3 +13.2) (p < 0.001). CHEKS items that addressed the patient experience during a clinical trial, such as the option to withdrawal from the study, performed worse (mean score of 3.1 out of 4) than items that addressed patient considerations prior to trial consent (mean score of 3.4) (p < 0.001). Participants most often obtained clinical trial information from registries (indicated by 55.9% of participants) and ophthalmology providers (28.2%). Of the participants who preferred to receive written information on clinical trials (89.1%), 85.4% preferred online over hardcopy distribution. Most participants preferred to receive clinical trial information on a recurring basis (84.8%).

Conclusions: There are common clinical trial misconceptions among adults with IRD. The findings from this study support public health efforts to develop educational interventions that enable equitable access to research opportunities for patients with IRD.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
Larson, Alexandraalw331@pitt.edualw331
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairAlabek,
Committee MemberVento, Jodieventojm@pitt.eduventojm
Committee MemberMartel,
Date: 16 May 2024
Date Type: Publication
Defense Date: 9 April 2024
Approval Date: 16 May 2024
Submission Date: 23 April 2024
Access Restriction: No restriction; Release the ETD for access worldwide immediately.
Number of Pages: 46
Institution: University of Pittsburgh
Schools and Programs: School of Public Health > Genetic Counseling
Degree: MS - Master of Science
Thesis Type: Master's Thesis
Refereed: Yes
Uncontrolled Keywords: Inherited retinal dystrophy, clinical trial, gene therapy, genetic counseling
Date Deposited: 16 May 2024 19:49
Last Modified: 16 May 2024 19:49

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  • Clinical Trial Knowledge Among Adults with Inherited Retinal Dystrophy (IRD). (deposited 16 May 2024 19:49) [Currently Displayed]


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