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Abstract Details

Exploring Knowledgeable Informant Reporting on the Earliest Changes of Parkinson’s Disease
Movement Disorders
P4 - Poster Session 4 (11:45 AM-12:45 PM)
3-010

Identifying PD in the earliest stages may be key to effective disease modification. The value of knowledgeable informant observations to identify early stage PD is unknown.

To investigate the value of knowledgeable informant  reports in early stage Parkinson's disease (PD)

We conducted a survey of persons who reported knowing a person with PD (PwPD) in the years before diagnosis through the online Fox Insight Study.  

1,073 knowledgeable informants (338 spouses, 16 parents, 105 siblings, 447 children, 69 friends, and 98 other) completed the survey, of whom  93% reported at least one PD-related feature in the PwPD prior to diagnosis, most often in the 3 years before diagnosis, but >10 years before in some. Tremor or shaking was reported by 41%, reduced sense of smell ( 30%), smaller handwriting (28%), worsening balance (28%), softer voice (26%), reduced facial expression (24%), moving more slowly (24%), shuffling or small steps (24%), difficulty staying asleep at night (24%), acting out dreams (23%), constipation (23%), nocturia (22%), anxiety (20%). Features reported by <20% included reduced arm swing when walking, falling and difficulty using new gadgets. 

Spouses (97%) and children (95%) were more likely to report pre-diagnostic features compared to  siblings (91%), friends (81%) or other family members (75%). Compared to children, spouses more often reported reduced sense of smell. (48% vs 24%), acting out dreams (30% vs 26%). Children reported more often than spouses worsening balance (39% vs 15%), shuffling or small steps (30% vs 15%), or less interest in leaving home (25% vs 14%).

Data collection is ongoing and additional data will be presented. 

Knowledgeable informants commonly notice PD-related features before the diagnosis of PD. Knowledgeable informant observations may be a useful adjunct to self-reported changes in identifying early stage disease.
Authors/Disclosures
Caroline M. Tanner, MD, PhD, FAAN (University of California San Francisco, Weill Institute for Neurosciences)
PRESENTER
Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Evidera. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Neurocrine. Dr. Tanner has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Jazz Pharmaceuticals/Cavion. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Bial . Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Supernus. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche Genentech. The institution of Dr. Tanner has received research support from Gateway LLC. The institution of Dr. Tanner has received research support from Roche\Genentech. The institution of Dr. Tanner has received research support from Michael J Fox Foundation . The institution of Dr. Tanner has received research support from National Institute of Health . The institution of Dr. Tanner has received research support from Department of Defense. Dr. Tanner has received personal compensation in the range of $500-$4,999 for serving as a Faculty, CME presentation with Medscape /WebND.
Monica Korell, MPH Ms. Korell has nothing to disclose.
Meredith Bock, MD (UCSF Center for Surgical Movement Disorders) The institution of Dr. Bock has received research support from American Academy of Neurology. The institution of Dr. Bock has received research support from Michael J Fox Foundation.
Ethan G. Brown, MD (University of California, San Francisco) Dr. Brown has received personal compensation in the range of $0-$499 for serving as a Consultant for Rune Labs, Inc. An immediate family member of Dr. Brown has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis. An immediate family member of Dr. Brown has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Brown has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for NEJM Knowledge Plus. The institution of Dr. Brown has received research support from Michael J. Fox Foundation. The institution of Dr. Brown has received research support from NIH.
Julien Valverde Twiggs No disclosure on file
Betsy Hulme (University of California, San Francisco) No disclosure on file
Brittany Contreras No disclosure on file
Kathleen Comyns (UCSF) No disclosure on file
Krista Harrison (University of California San Francisco) No disclosure on file