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Abstract Details

Patient reported baseline measures in RAD-PD reveal marked heterogeneity in a DBS cohort
Movement Disorders
Movement Disorders Posters (7:00 AM-5:00 PM)
099

Describe the baseline characteristics of an initial subset of patients enrolled in RAD-PD.

RAD-PD is a multicenter registry that systematically characterizes patients with Parkinson’s disease (PD) undergoing deep brain stimulation (DBS). Patient reported outcomes (PROs) are a main component of the captured data elements.

Participating sites collect a minimum dataset of clinician-rated measures and PROs at baseline (pre-operative), 6-months and annually to 5 years. PROs consist of NIH Common Data Elements, and validated and recommended disease-specific and symptom-relevant rating scales.  Additional surgical and device-related data is extracted from charts. We report the baseline characteristics of the initial subset of subjects enrolled at select sites. 

17 subjects (n=12M) were enrolled across 3 sites over 8 months. Mean age (n=16) was 72yrs (SD 8.2, range 58-85), mean PD duration (n=16) was 7.3yrs (range 2-13, SD 3.3), and mean HY stage was 3.1 (SD 0.9, range 2-5). This subset was largely homogeneous in ethnicity and race and reported a wide range of educational achievement. The majority live in their own home, are married, and are functionally independent but were retired or permanently disabled and semi- or mostly homebound. Both Medicare and private insurance beneficiaries were enrolled. The EQ-5D (n=15) mean index value was 0.67 (SD 0.14, range 0.32-0.88) and mean VAS (n=11) was 74.1 (range 50-85, SD 9.44). NeuroQOL-Ability scores (n=16) corresponded to a mean T-score of 42.7 (range 24.1-48.3) but the mean Lawton IADL score was 6.2 (SD 2.1, range 3-8). Patients reported a wide range of non-motor symptom severity on the BDI, GAD-7 and NMSS. 
RAD-PD systematically and broadly characterizes a real-world cohort of PD patients undergoing evaluation for DBS. In this initial subset baseline analysis, PD patients reported marked heterogeneity in demographic, psychosocial and non-motor features. These data will enable patient-focused descriptions of DBS outcomes and associated determinants. 
Authors/Disclosures
Joohi Jimenez Shahed, MD, FÂé¶¹´«Ã½Ó³»­ (Icahn School of Medicine at Mount Sinai)
PRESENTER
Dr. Jimenez Shahed has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Teva. Dr. Jimenez Shahed has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Medtronic. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbvie. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amneal. Dr. Jimenez Shahed has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for BlueRock. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Treefrog. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving as a Consultant for RebrAIn. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for BlueRock Therapeutics. Dr. Jimenez Shahed has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for PhotoPharmics. Dr. Jimenez Shahed has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Emalex. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biohaven. The institution of Dr. Jimenez Shahed has received research support from Amneal. The institution of Dr. Jimenez Shahed has received research support from Annovis. The institution of Dr. Jimenez Shahed has received research support from SAGE. The institution of Dr. Jimenez Shahed has received research support from Ono Pharmaceuticals. The institution of Dr. Jimenez Shahed has received research support from BlueRock. The institution of Dr. Jimenez Shahed has received research support from Neuron23. Dr. Jimenez Shahed has received personal compensation in the range of $0-$499 for serving as a Faculty with Movement Disorders Society. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving as a Faculty with Âé¶¹´«Ã½Ó³»­. Dr. Jimenez Shahed has received personal compensation in the range of $500-$4,999 for serving as a Grant Reviewer with Parkinson Foundation.
No disclosure on file
Michele K. York, PhD, ABPP-CN (Baylor College of Medicine) Dr. York has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for RAD-PD. The institution of Dr. York has received research support from Michael J. Fox Foundation. The institution of Dr. York has received research support from NIH. The institution of Dr. York has received research support from Takeda.
Mustafa S. Siddiqui, MD, FÂé¶¹´«Ã½Ó³»­ Dr. Siddiqui has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Boston Scientific Neuromodulation. Dr. Siddiqui has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Medtronic. The institution of Dr. Siddiqui has received research support from Boston Scientific Neuromodulation. The institution of Dr. Siddiqui has received research support from Abbvie. The institution of Dr. Siddiqui has received research support from National Institute of Health .
No disclosure on file
No disclosure on file