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Abstract Details

Neuronal Ceroid Lipofuscinosis Assessment Utilizing Virtual Visits During a Pandemic
Child Neurology and Developmental Neurology
Child Neurology and Developmental Neurology Posters (7:00 AM-5:00 PM)
036
To implement and assess a virtual research visit model for neuronal ceroid lipofuscinosis (NCL) research using tele-video in subjects’ homes
The NCLs are rare neurodegenerative disorders of childhood. For ongoing research studies, the COVID-19 pandemic has required rethinking visits to limit in-person contact when feasible, while still achieving the primary research goals

We used an encrypted virtual video platform that provided confidentiality and privacy.  Before the virtual research visit, a test visit was completed to familiarize subjects with remote research processes.  Instructions on using the platform were sent ahead of time, including a study team contact telephone number in case problems arose during connecting.  

Test visit activities included assessment of audio/video quality and evaluation of the home study site.  A quiet space, free of distractions and interruptions in the subject’s home was selected with sufficient lighting and appropriate space and positioning for assessment.  Seating position was optimized to enhance the examiner’s view of the subject’s face and body, as body language could be missed over video. 

For the research visit, eConsent was obtained utilizing REDCap, a secure, HIPAA-compliant web-application which allowed for synchronous consent review and sign off.  Study team members were scheduled to join at certain times or kept in a virtual “waiting room” until they were needed to reduce visit disruptions.  Some subjects opted to complete portions of the visit at different times of the day.

In the 6 months since the beginning of pandemic restriction, we have completed 24 virtual study visits across two research protocols. Virtual visit activities have included neurologic exam, neuropsychological assessment, and administration of a disease-specific rating scale. Future goals include use of wearable devices and biometric assessments in the home environment.


 

Virtual visits are a feasible way to continue to engage subjects when travel is impossible.

Authors/Disclosures
Amy Vierhile, NP, DNP (University of Rochester Medical Center)
PRESENTER
Ms. Vierhile has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Greenwich Biosciences.
Grace A. Zimmerman, MPH (University of Rochester) The institution of Ms. Zimmerman has received research support from National Institutes of Health. The institution of Ms. Zimmerman has received research support from Batten Disease Support and Research Association. The institution of Ms. Zimmerman has received research support from Greater Rochester Health Foundation.
Margaux C. Masten, Undergraduate The institution of Miss Masten has received research support from Âé¶¹´«Ã½Ó³»­. The institution of Miss Masten has received research support from Neurogene. The institution of Miss Masten has received research support from Amicus. The institution of Miss Masten has received research support from Beyond Batten Disease Foundation. The institution of Miss Masten has received research support from NIH.
Camille S. Corre, MD (University of Rochester Medical Center) Dr. Corre has nothing to disclose.
Heather Adams The institution of Heather Adams has received research support from Current: NIH; Past: Abeona; Batten Research Alliance; American University Centers on Disabilities. An immediate family member of Heather Adams has received publishing royalties from a publication relating to health care. Heather Adams has received personal compensation in the range of $500-$4,999 for serving as a Consultant with Critical Path Institute.
Jonathan W. Mink, MD, PhD, FÂé¶¹´«Ã½Ó³»­ The institution of Dr. Mink has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amicus. The institution of Dr. Mink has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurogene. Dr. Mink has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for TEVA. Dr. Mink has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for PTC Therapeutics. Dr. Mink has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Applied Therapeutics. Dr. Mink has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Âé¶¹´«Ã½Ó³»­. The institution of Dr. Mink has received research support from Neurogene. The institution of Dr. Mink has received research support from NIH. Dr. Mink has received publishing royalties from a publication relating to health care. Dr. Mink has received personal compensation in the range of $500-$4,999 for serving as a Member, Study Section with NINDS.
Erika F. Augustine, MD, FÂé¶¹´«Ã½Ó³»­ (Kennedy Krieger Institute) The institution of Dr. Augustine has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Latus Bio. Dr. Augustine has received personal compensation in the range of $10,000-$49,999 for serving as an officer or member of the Board of Directors for American Board of Psychiatry and Neurology. Dr. Augustine has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Annals of Neurology. The institution of Dr. Augustine has received research support from NIH. The institution of Dr. Augustine has received research support from Beyond Batten Disease Foundation. Dr. Augustine has received publishing royalties from a publication relating to health care. Dr. Augustine has a non-compensated relationship as a Member, Board of Directors with American Brain Foundation that is relevant to Âé¶¹´«Ã½Ó³»­ interests or activities. Dr. Augustine has a non-compensated relationship as a Scientific Advisor with ARIA that is relevant to Âé¶¹´«Ã½Ó³»­ interests or activities.