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Tracking Parkinson’sThe PRoBaND study
December 2016
Funded by:
Callum Smith
Study Update - Callum Smith
Study Progress up to Now
February 2012 (study start)
V1
V2
V3
V4
V5
V6
V7
Original study Interim extension
V8
V9
• 2011 recent onset participants recruited
• 256 young onset participants recruited
• Total 2270
(0-36 months) (42-54 months)
Study Update - Callum Smith
Progress: Patients for Visit 8
• Consistent recruitment to the extension this year
• Average of 41 per month in 2016
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10
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60
Month
Patie
nts R
ecru
ited
Study Update - Callum Smith
Progress: Patients for Visit 9
• First V9s recruited in Glasgow in summer
• Should average double figures per month in 2017
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4
6
8
10
12
Patie
nts R
ecru
ited
Month
Study Update - Callum Smith
Progress: Relatives
• Most relatives have been involved already: total 339 (target 860)
• Recruitment open until at least November 2017
• Relative follow-up visits to start in mid-to-late 2017
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Rela
tives
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ruite
d
Month
Study Update - Callum Smith
Extension: Common Queries (1)
IQ-CODE
• Please remind patients to bring a relative or friend with them if possible
• The test can be given to the patient to take away with them, to be completed at home, if this isn’t an option
• Alternatively, it can be completed over the phone
New Assessments Reminder
• Likelihood of Diagnosis and Dyskinesia Rating Scale
Study Update - Callum Smith
Extension: Common Queries (2)
Funding
• Claims for V8/9 funding made via Tracking Parkinson’s website
• Frequency of payment varies by site, mainly according to patient volume
Reminder:
• £73.55 for a V8
• £169.30 for a V9
Study Update - Callum Smith
Full Extension
February 2012 (study start)
V1
V2
V3
V4
V5
V6
V7
Original study Interim extension
V8
V9
V10
Full extension
V11
(0-36 months) (42-54 months) (72-90 months)
• Ethics submitted; approval likely to be early next year
• Visits move to 18-month intervals: Visit 10 at 72 months (6 years) and Visit 11 at 90 months (7 and a half years).
• Content will follow the established format; we will send out new consent and information sheets once approval is granted.
Study Update - Callum Smith
New Journal Articles• Malek et al., 2015. “Tracking Parkinson’s: Study Design and Baseline Data.”
• Swallow et al., 2016. “Statins are underused in recent-onset Parkinson’sdisease with increased vascular risk: findings from the UK TrackingParkinson’s and Oxford Parkinson’s Disease Centre (OPDC) discoverycohorts.”
• Malek et al., 2016. “Variation in recent onset Parkinson’s disease:implications for prodromal detection.”
• Malek et al., 2016. “Olfaction is Parkin single and compoundheterozygotes in a cohort of young onset Parkinson’s disease patients.”
All can be found on PubMed and Google Scholar.
Study Update - Callum Smith
New Website
www.trackingparkinsons.org.uk
All old ClinBase functions are under the “Clinicians” tab.
These are mostly in the same format.
Participants will have the option to enter their own data for future visits.
Study Update - Callum Smith
Staff Changes
• I’m just beginning a PhD with Dr. Grosset
• Alison retiring March 2017
• Replacement staff to join us early 2017
Study Update - Callum Smith
Any questions, please ask
Study Update - Callum Smith