Objective: To describe the methodology and preliminary baseline data from the Nigeria Parkinson Disease Registry (NPDR).

Background: Disease registries offer an opportunity to expand the understanding of the epidemiology of Parkinson disease, and provide a platform for research that can strengthen evidence for policies aimed at reducing disease burden. It enables accumulation of data across geographically distinct locations, facilitating comprehensive insight into disease profile and establishes networks for cross-national prospective studies powered by significantly larger sample sizes.

Method: The NPDR is a prospective collaborative national registry established in November 2016, with a target of registering 1000 PD cases. Ethics approval was obtained for the project. Following a call for participation sent to practicing neurologists across the country, the registry protocol was implemented by collaborating neurologists. Written informed consent was obtained from each participant with permission to re-contact. The registry records basic data for consecutive incident and prevalent PD cases fulfilling the UK PD Brain Bank Criteria into a secure website (www.parkinsonnigeria.com). This data includes demographic, geographic, and clinical data.

Results: The registry covers sites in 15 of 36 states and the Federal Capital Territory. 392 PD cases were registered as at December 2018, with gender distribution of 291 male (74.2%) and 101 female (25.8%). The age-related data are: median age at onset (years) 60 years; mean age at onset overall 59.8±10.5; males – 59.9 ±10.5; females – 59.7±10.4 (p=0.90). Young onset PD (YOPD) (age at onset ≤50) was documented in 82 (20.9%) (female – 20.8%, male – 21%); whereas YOPD (age at onset ≤40) occurred in 13 (3.3%) (female – 2.0%; male – 3.8%). Family history of PD was present in 23 (5.9%) (first degree relative (FDR) in 17 (4.3%) and second degree relative (SDR) in 6 (1.5%), while  family history of tremor occurred in 41 (10.5%) (FDR in 29 (7.4%) and SDR in 13 (3.3%)). The reported side/site of onset of motor symptoms was the right upper limb in 178 (45.4%), and left upper limb in 158 (40.3%). The most frequently noted initial/earliest motor symptoms of PD were tremor only in 177 (45.2%), tremor and slowness in 90 (23.0%), and slowness only in 33 (8.4%).

Conclusion: The first national PD register in sub Saharan Africa. The database will target achieving 100% coverage (i.e. at least one site in all 36 states) over the next 18 months.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-nigeria-parkinson-disease-registry/