Optimizing Low Vision Rehabilitation in Emotionally Distressed Patients With Inherited Retinal Diseases

This study is looking at whether combining Low Vision Rehabilitation (LVR) with Emotion Regulation Therapy (ERT) can help people with inherited retinal diseases (IRDs) who are experiencing emotional distress related to their vision loss. LVR involves working with a specialist to find devices and techniques to improve your vision and mobility. ERT is a type of talk therapy that helps you manage your emotions. The study aims to see if LVR improves vision-related difficulties and distress, and if ERT further enhances these benefits, especially for those with higher anxiety. You may be able to join if you are 18 or older, have a vision impairment due to an IRD, and meet certain vision criteria. The study plans to enroll 180 participants, but its current status is unclear.

Study design
This is an interventional study, meaning participants will receive specific treatments. It aims to enroll 180 participants.
What's involved
You will have an initial session with an LVR specialist and ten weekly, 1-hour sessions of Emotion Regulation Therapy. Your vision and distress levels will be measured at the beginning and at 6 months.
Compensation
Not stated in the trial record.
Follow-up
Your progress will be followed for 6 months after starting the interventions.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06651736

Optimizing Low Vision Rehabilitation in Emotionally Distressed Patients With Inherited Retinal Diseases

Recruiting
NAAges 18+InterventionalTreatment
University of Michigan
~180 participants
Updated 2026-03-23 on ClinicalTrials.gov
What's tested:Low Vision Rehabilitation (LVR)Emotion Regulation Therapy (ERT)

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Determine if LVR improves vision-related disabilities and distress measures by the Michigan Vision-related Anxiety Questionnaire (MVAQ)
Measured over Baseline to 6 month
+5 more outcomes measured
Inherited Retinal Diseases
1 sites across 1 states
Michigan1
  • K. Thiran Jayasundera, MD, MS · PRINCIPAL_INVESTIGATOR · University of Michigan

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Eligibility criteria

Inclusion

Diagnosed with vision impairment with IRD etiology
Must have had a clinical exam with an IRD specialist within the three months of assignment to Arm
Have had a Goldmann visual field that was tested with III-4e isopter within the last year
Have a disability greater than zero theta in any of the domains of Michigan Retinal Dystrophy Questionnaire (MRDQ)
Have an indication from the IRD specialist that the ocular condition will not deteriorate over the next 1- year
Able to participate in 10 weeks of ERT sessions while being physically located in Michigan (these will take place in the first 10 months of the study)

Exclusion

Having other ocular comorbidities including those associated with an IRD such as control of cystoid macular edema (CME)
Functional needs regarding low vision (i.e. activities of daily living) have been adequately addressed per a study low vision specialist
Current mental health therapy
The participant must not have an elevated suicidal intention (SI) or suicide risk based on Patient Health Questionnaire (PHQ-9) further information collected at screening (If suicidal intentions are identified, the study staff will complete the suicide protocol (per protocol)
If the participant is using medication for mental health or psychiatry concerns, participants must be on a stable dose of the medication (1-month of taking), otherwise will be excluded
Inability to complete study task requirements
  • Determine if LVR improves vision-related disabilities and distress measures by the Michigan Vision-related Anxiety Questionnaire (MVAQ)Baseline to 6 month

    The Michigan Vision-related Anxiety Questionnaire is a 14 -item questionnaire designed to assess anxiety/distress related to vision impairments. Responses can range between: Never, Sometimes, Frequently, Always, N/A for Non-Vision Reasons. The questionnaire provides 2 scores (one for anxiety about rod function and one for anxiety about cone function). Both of those scores fall between -3 and 3 (an increasing score indicates higher levels of anxiety).

  • Determine if LVR improves vision-related disabilities and distress measures by the Michigan Retinal Degeneration Questionnaire (MRDQ)Baseline to 6 month

    The Michigan Retinal Degeneration Questionnaire is a 59-item questionnaire aimed to assess vision-related functional impairment. Responses can range between: None, A little difficulty, Moderate difficulty, Extreme difficulty, My vision is too poor to do this, N/A for non-vision reasons. The questionnaire provides 7 scores (for 7 different domains of vision) and also range from -3 to 3 (0 is centered at the mean trait level of the population and extreme values for theta (i.e., -3, +3) are indicative of low or high visual dysfunction based on item responses).

  • Determine if LVR measures are different between low-distress and high-distress groups accessed at month-6 by MVAQBaseline, 6 months

    Comparison between low-distress arm and high-distress arm prior to ERT treatment at month-6. The Michigan Vision-related Anxiety Questionnaire is a 14 -item questionnaire designed to assess anxiety/distress related to vision impairments. The Michigan Vision-related Anxiety Questionnaire is a 14 -item questionnaire designed to assess anxiety/distress related to vision impairments. Responses can range between: Never, Sometimes, Frequently, Always, N/A for Non-Vision Reasons. The questionnaire provides 2 scores (one for anxiety about rod function and one for anxiety about cone function). Both of those scores fall between -3 and 3 (an increasing score indicates higher levels of anxiety).

  • Determine if LVR measures are different between low-distress and high-distress groups accessed at month-6 by MRDQBaseline, 6 months

    Comparison between low-distress arm and high-distress arm prior to ERT treatment at month-6. The Michigan Retinal Degeneration Questionnaire is a 59-item questionnaire aimed to assess vision-related functional impairment. Responses can range between: None, A little difficulty, Moderate difficulty, Extreme difficulty, My vision is too poor to do this, N/A for non-vision reasons. The questionnaire provides 7 scores (for 7 different domains of vision) and also range from -3 to 3 (0 is centered at the mean trait level of the population and extreme values for theta (i.e., -3, +3) are indicative of low or high visual dysfunction based on item responses).

  • Determine if adjunctive ERT treatment in the high-distress arms improves vision-related disabilities and vision-related distress measures greater than LVR alone measured by MVAQBaseline, 6 months

    The Michigan Vision-related Anxiety Questionnaire is a 14 -item questionnaire designed to assess anxiety/distress related to vision impairments. Responses can range between: Never, Sometimes, Frequently, Always, N/A for Non-Vision Reasons. The questionnaire provides 2 scores (one for anxiety about rod function and one for anxiety about cone function). Both of those scores fall between -3 and 3 (an increasing score indicates higher levels of anxiety).

  • Determine if adjunctive ERT treatment in the high-distress arms improves vision-related disabilities and vision-related distress measures greater than LVR alone measured by the MRDQBaseline, 6 months

    The Michigan Retinal Degeneration Questionnaire is a 59-item questionnaire aimed to assess vision-related functional impairment. Responses can range between: None, A little difficulty, Moderate difficulty, Extreme difficulty, My vision is too poor to do this, N/A for non-vision reasons. The questionnaire provides 7 scores (for 7 different domains of vision) and also range from -3 to 3 (0 is centered at the mean trait level of the population and extreme values for theta (i.e., -3, +3) are indicative of low or high visual dysfunction based on item responses).