Additional PD cohorts to be aware of and how to access them

Accessing and Understanding Data
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Most people here are likely familiar with major cohorts like the Parkinson’s Progression Markers Initiative, the Parkinson’s Disease Biomarkers Program, BioFIND, Fox Insight, the Global Parkinson’s Genetics Program, and large biobanks like the UK Biobank. However, it’s important to note that there are other PD cohorts that could also be valuable for new research and discoveries.

In this post, I’d like to share a list of some additional cohorts I’ve encountered during my studies, and invite others to share their experiences accessing and using this type of data!

Cohort Name Cohort’s reference Example of an article that utilized this data How to obtain access
The Luxembourg Parkinson’s Study (LuxPARK) The Luxembourg Parkinson's Study: A Comprehensive Approach for Stratification and Early Diagnosis - PubMed Cardiovascular history and risk of idiopathic Parkinson's disease: a cross-sectional observational study - PubMed Request form obtained through the following website: Research & Participation
Cohort Study to Identify Predictor Factors of Onset and Progression of Parkinson’s Disease (ICEBERG) ClinicalTrials.gov Progression subtypes in Parkinson’s disease identified by a data-driven multi cohort analysis | npj Parkinson's Disease Email contact with cohort’s representative (marie.vidailhet@psl.aphp.fr)
Oxford Parkinson’s Disease Centre (OPDC) Discovery Cohort https://portal.dementiasplatform.uk/CohortDirectory/Item?fingerPrintID=OPDC%20Discovery The influence of age and gender on motor and non-motor features of early Parkinson's disease: initial findings from the Oxford Parkinson Disease Center (OPDC) discovery cohort - PubMed Request form obtained through the following website: Apply for Access – DPUK Data Portal
Early Parkinson’s Disease Longitudinal Singapore (PALS) Cohort Disease Progression of Data-Driven Subtypes of Parkinson's Disease: 5-Year Longitudinal Study from the Early Parkinson's Disease Longitudinal Singapore (PALS) Cohort - PubMed Disease Progression of Data-Driven Subtypes of Parkinson's Disease: 5-Year Longitudinal Study from the Early Parkinson's Disease Longitudinal Singapore (PALS) Cohort - PubMed Email contact with cohort’s representative (louis.tan.c.s@singhealth.com.sg)
Tracking Parkinson’s study (ProBAND) Tracking Parkinson’s: Study Design and Baseline Patient Data Developing and validating Parkinson's disease subtypes and their motor and cognitive progression - PubMed Email contact with cohort’s representative (tracking-parkinsons@glasgow.ac.uk)
Drug Interaction with Genes in PD (DIGPD) ClinicalTrials.gov Prediction of cognition in Parkinson’s disease with a clinical-genetic score: a longitudinal analysis of nine cohorts - PMC Email contact with Jean-Christophe Corvol (couldn’t find his email)

Additionally, I’d like to ask about your experiences in accessing and obtaining data from these and other cohorts. Here are my questions:

  1. Do you know of other relevant cohorts that you think are worth mentioning?
  2. How straightforward was the process of obtaining data from the cohort you applied to?
  3. Have you ever obtained data from clinical trials? If so, was the process challenging?

@hirotaka, I noticed you’re the first author of this significant study (Genetic risk of Parkinson disease and progression:: An analysis of 13 longitudinal cohorts - PubMed). First, congratulations! Second, do you have any insights to share on this topic? 13 cohorts seems like a huge work!

@vdardov and @ehutchins, knowing that you work with AMP-PD data, I imagine you might have experience in applying for cohort access. Could you share any insights on this?

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Hi @danieltds , Thank you for this summary and good question about the 13 cohorts. We contacted the PIs of each study and most of them are shared/will be shared through AMP-PD/GP2 mechanisms!

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