# \#data-access **URL:** https://rcop.michaeljfox.org/tag/data-access/27.md [Latest](https://rcop.michaeljfox.org/latest.md) · [Categories](https://rcop.michaeljfox.org/categories.md) · [Tags](https://rcop.michaeljfox.org/tags.md) --- ## [What do you wish someone had explained to you earlier in Parkinson’s research?](https://rcop.michaeljfox.org/t/what-do-you-wish-someone-had-explained-to-you-earlier-in-parkinson-s-research/1733)
**Author:** [@psaffie](https://rcop.michaeljfox.org/u/psaffie)\ **Replies:** 5\ **Last updated:** [November 4, 2026, 12:02pm UTC](https://rcop.michaeljfox.org/t/what-do-you-wish-someone-had-explained-to-you-earlier-in-parkinson-s-research/1733 "2026-11-04T12:02:49Z")
Hi everyone! I’m currently preparing a course aimed at making Parkinson’s research more accessible to people from different backgrounds. I’ll be happy to share it with this group once it’s available! But first, I’m cur… --- ## [Call for Proposals: MJFF Training and Integrated Learning Support Awards](https://rcop.michaeljfox.org/t/call-for-proposals-mjff-training-and-integrated-learning-support-awards/1690)
**Author:** [@malosco](https://rcop.michaeljfox.org/u/malosco)\ **Replies:** 0\ **Last updated:** [September 25, 2026, 6:25pm UTC](https://rcop.michaeljfox.org/t/call-for-proposals-mjff-training-and-integrated-learning-support-awards/1690 "2026-09-25T18:25:31Z")
New funding opportunity! The Mentorship and Training Task Force is currently soliciting proposals to support training and integrated learning initiatives! Proposals are due November 13, 2026. Up to five proposals ($5,000… --- ## [Navigating Fox Insight Parkinson's Disease Microbiome (PDMB) Data](https://rcop.michaeljfox.org/t/navigating-fox-insight-parkinsons-disease-microbiome-pdmb-data/1644)
**Author:** [@mattk](https://rcop.michaeljfox.org/u/mattk)\ **Replies:** 1\ **Last updated:** [July 30, 2026, 6:13pm UTC](https://rcop.michaeljfox.org/t/navigating-fox-insight-parkinsons-disease-microbiome-pdmb-data/1644 "2026-07-30T18:13:34Z")
Thank you to all that have reached out over the past year with questions about the Fox Insight Parkinson’s Disease Microbiome (PDMB) dataset available on Fox DEN. To date, answers to these questions have been spread acro… --- ## [How much curation goes into the Curated Data Cut in PPMI?](https://rcop.michaeljfox.org/t/how-much-curation-goes-into-the-curated-data-cut-in-ppmi/1210)
**Author:** [@vcatterson](https://rcop.michaeljfox.org/u/vcatterson)\ **Replies:** 5\ **Last updated:** [June 29, 2026, 10:40am UTC](https://rcop.michaeljfox.org/t/how-much-curation-goes-into-the-curated-data-cut-in-ppmi/1210 "2026-06-29T10:40:36Z")
Hi folks! I have a small question about the Curated Data Cut in PPMI: how much curation goes into this table? If I downloaded the source data tables and joined them together, would I create exactly the same dataset? My … --- ## [What are the intended/best ways to select MR images for download, matched to subject data?](https://rcop.michaeljfox.org/t/what-are-the-intended-best-ways-to-select-mr-images-for-download-matched-to-subject-data/1524)
**Author:** [@Luca](https://rcop.michaeljfox.org/u/Luca)\ **Replies:** 7\ **Last updated:** [May 1, 2026, 11:19am UTC](https://rcop.michaeljfox.org/t/what-are-the-intended-best-ways-to-select-mr-images-for-download-matched-to-subject-data/1524 "2026-05-01T11:19:58Z")
I can’t really understand what’s the best way (or the intended way) to search and download MR images, matching them to subject information. An example: I want MRs that are T1, isotropic 3D, and I want each image (each t… --- ## [Invitation to Join the Bridge Analytics Environment (BAE) Early Adopter Group to streamline Parkinson's research](https://rcop.michaeljfox.org/t/invitation-to-join-the-bridge-analytics-environment-bae-early-adopter-group-to-streamline-parkinsons-research/1482)
**Author:** [@erainaldi](https://rcop.michaeljfox.org/u/erainaldi)\ **Replies:** 3\ **Last updated:** [March 26, 2026, 9:31am UTC](https://rcop.michaeljfox.org/t/invitation-to-join-the-bridge-analytics-environment-bae-early-adopter-group-to-streamline-parkinsons-research/1482 "2026-03-26T09:31:08Z")
Dear Colleagues, We invite you to join the Strategic Early Adopter Group for the Bridge Analytics Environment (BAE). Our mission is to accelerate “time-to-insight” for Parkinson’s research by replacing weeks of manual d… --- ## [Accessing FASTQ files of AMP-PD](https://rcop.michaeljfox.org/t/accessing-fastq-files-of-amp-pd/1452)
**Author:** [@bshaun](https://rcop.michaeljfox.org/u/bshaun)\ **Replies:** 8\ **Last updated:** [March 9, 2026, 9:36pm UTC](https://rcop.michaeljfox.org/t/accessing-fastq-files-of-amp-pd/1452 "2026-03-09T21:36:53Z")
Hi !!! I was curious to check how to request the raw fastq files from AMP-PD. Based on tier2 access one can get access to the genomics file. The Tier2 access link leads me to the results of the transcriptomics analysis.… --- ## [AMP PD neuron-derived extracellular vesicle (EV) RNA-Seq Data Release](https://rcop.michaeljfox.org/t/amp-pd-neuron-derived-extracellular-vesicle-ev-rna-seq-data-release/1430)
**Author:** [@ehutchins](https://rcop.michaeljfox.org/u/ehutchins)\ **Replies:** 2\ **Last updated:** [February 18, 2026, 5:29pm UTC](https://rcop.michaeljfox.org/t/amp-pd-neuron-derived-extracellular-vesicle-ev-rna-seq-data-release/1430 "2026-02-18T17:29:56Z")
I wanted to highlight a new data type released with AMP PD in December 2025: RNA-Seq of neuron-derived extracellular vesicles (NDEVs). Extracellular vesicles are released from cells and carry cargo (DNA, RNA, proteins, … --- ## [Fox Insight PD Microbiome (PDMB) Metadata & Resources](https://rcop.michaeljfox.org/t/fox-insight-pd-microbiome-pdmb-metadata-resources/903)
**Author:** [@bmbrown317](https://rcop.michaeljfox.org/u/bmbrown317)\ **Replies:** 20\ **Last updated:** [January 22, 2026, 4:55pm UTC](https://rcop.michaeljfox.org/t/fox-insight-pd-microbiome-pdmb-metadata-resources/903 "2026-01-22T16:55:03Z")
Hi, I recently reviewed the PD Microbiome metadata and I am curious if metadata exists for the Control group as well? If so, could you point me in the right direction? The FoxInsight.csv file I accessed seems to feature… --- ## [How can I get access to the SAA status of the subjectives in Prodromal or HC cohort?](https://rcop.michaeljfox.org/t/how-can-i-get-access-to-the-saa-status-of-the-subjectives-in-prodromal-or-hc-cohort/1324)
**Author:** [@blin](https://rcop.michaeljfox.org/u/blin)\ **Replies:** 4\ **Last updated:** [December 10, 2025, 2:23pm UTC](https://rcop.michaeljfox.org/t/how-can-i-get-access-to-the-saa-status-of-the-subjectives-in-prodromal-or-hc-cohort/1324 "2025-12-10T14:23:05Z")
HI there! I need the SAA status of the subjectives in Prodromal or HC cohort for some research on biomarkers with PD, but I couldn’t find it on PPMI, could someone told me how to apply for it? --- ## [Anyone worked with cosmos data?](https://rcop.michaeljfox.org/t/anyone-worked-with-cosmos-data/1328)
**Author:** [@ecebayram](https://rcop.michaeljfox.org/u/ecebayram)\ **Replies:** 3\ **Last updated:** [November 25, 2025, 5:56pm UTC](https://rcop.michaeljfox.org/t/anyone-worked-with-cosmos-data/1328 "2025-11-25T17:56:11Z")
Hiiiiiiii everyone, has anyone worked with Cosmos data before? I’m on the hunt for some insights on capabilities with that data. --- ## [🧠 Imaging Subgroup | Data Modality & Methodology Task Force](https://rcop.michaeljfox.org/t/imaging-subgroup-data-modality-methodology-task-force/1286)
**Author:** [@AmgadDroby](https://rcop.michaeljfox.org/u/AmgadDroby)\ **Replies:** 1\ **Last updated:** [October 14, 2025, 6:32pm UTC](https://rcop.michaeljfox.org/t/imaging-subgroup-data-modality-methodology-task-force/1286 "2025-10-14T18:32:41Z")
A quick shoutout to the new Imaging Subgroup (@AmgadDroby , @apinstein , @hirotaka) under the Data Modality & Methodology Task Force. This group is currently focused on curating and combining pipelines to assess sub-reg… --- ## [MRI Scanner model information](https://rcop.michaeljfox.org/t/mri-scanner-model-information/1260)
**Author:** [@tiago.azevedo](https://rcop.michaeljfox.org/u/tiago.azevedo)\ **Replies:** 6\ **Last updated:** [October 3, 2025, 6:27pm UTC](https://rcop.michaeljfox.org/t/mri-scanner-model-information/1260 "2025-10-03T18:27:57Z")
Hi everyone! I was checking for possible “batch effects” in the MRI imaging data, and thus I was trying to access information about possible different scanner models where each person was scanned on. When looking at th… --- ## [Parkinson’s Disease Training Roadmap! Feedback Needed](https://rcop.michaeljfox.org/t/parkinson-s-disease-training-roadmap-feedback-needed/982)
**Author:** [@psaffie](https://rcop.michaeljfox.org/u/psaffie)\ **Replies:** 5\ **Last updated:** [September 26, 2025, 6:58pm UTC](https://rcop.michaeljfox.org/t/parkinson-s-disease-training-roadmap-feedback-needed/982 "2025-09-26T18:58:35Z")
Hi everyone, I’m excited to share a draft of our Parkinson’s Disease Clinical & Genetic Training Roadmap—a resource designed for undergraduates, clinicians, geneticists, and researchers. This roadmap is still a work in … --- ## [Open Science Resource Interest Group](https://rcop.michaeljfox.org/t/open-science-resource-interest-group/1209)
**Author:** [@mattk](https://rcop.michaeljfox.org/u/mattk)\ **Replies:** 3\ **Last updated:** [September 24, 2025, 12:07pm UTC](https://rcop.michaeljfox.org/t/open-science-resource-interest-group/1209 "2025-09-24T12:07:25Z")
The Open Science Resource Interest Group within the Data and Methodology Task force had an excellent kick-off call last week to begin our next cycle of projects. Led by @ehutchins, @mariam\_isayan, and @mattk, we are pur… --- ## [Short Survey - Help us create and curate a neuroimaging GitHub repo](https://rcop.michaeljfox.org/t/short-survey-help-us-create-and-curate-a-neuroimaging-github-repo/1130)
**Author:** [@AmgadDroby](https://rcop.michaeljfox.org/u/AmgadDroby)\ **Replies:** 5\ **Last updated:** [September 16, 2025, 5:24pm UTC](https://rcop.michaeljfox.org/t/short-survey-help-us-create-and-curate-a-neuroimaging-github-repo/1130 "2025-09-16T17:24:44Z")
Hey everyone, Following up on the earlier post on May 19th about setting up a shared GitHub repo for imaging methods & scripts – we want to make sure we focus on what’s actually useful for you all. 1. What types of ana… --- ## [Federated Learning for Multi-Center Imaging Studies (PPMI/ADNI)](https://rcop.michaeljfox.org/t/federated-learning-for-multi-center-imaging-studies-ppmi-adni/1080)
**Author:** [@AmgadDroby](https://rcop.michaeljfox.org/u/AmgadDroby)\ **Replies:** 3\ **Last updated:** [August 29, 2025, 5:30pm UTC](https://rcop.michaeljfox.org/t/federated-learning-for-multi-center-imaging-studies-ppmi-adni/1080 "2025-08-29T17:30:21Z")
In large-scale neuroimaging initiatives like PPMI and ADNI, data is collected across multiple sites, but direct pooling is often limited, or entirely hindered, by local IRB restrictions, regulatory constraints, and site-… --- ## [Medication/drug categorization](https://rcop.michaeljfox.org/t/medication-drug-categorization/1183)
**Author:** [@ecebayram](https://rcop.michaeljfox.org/u/ecebayram)\ **Replies:** 3\ **Last updated:** [August 7, 2025, 7:31pm UTC](https://rcop.michaeljfox.org/t/medication-drug-categorization/1183 "2025-08-07T19:31:16Z")
Hi peeps, any insight on how wide range of medications should be grouped for analysis? it’s not just dopaminergic meds, the data come from people being asked what meds they use for longer than 6 months so it could be any… --- ## [Creating a data repository to share data from your publication](https://rcop.michaeljfox.org/t/creating-a-data-repository-to-share-data-from-your-publication/1158)
**Author:** [@ecebayram](https://rcop.michaeljfox.org/u/ecebayram)\ **Replies:** 2\ **Last updated:** [August 1, 2025, 4:36pm UTC](https://rcop.michaeljfox.org/t/creating-a-data-repository-to-share-data-from-your-publication/1158 "2025-08-01T16:36:18Z")
Hiya everyone, I recently wrapped up a pilot remote survey study on environmental exposures and medical history for Lewy body dementia to look into sex differences for risk factors. People filled out the survey anonymous… --- ## [Intro to ADNI and adnimerge for AD/PD Researchers](https://rcop.michaeljfox.org/t/intro-to-adni-and-adnimerge-for-ad-pd-researchers/993)
**Author:** [@hirotaka](https://rcop.michaeljfox.org/u/hirotaka)\ **Replies:** 3\ **Last updated:** [June 10, 2025, 3:18pm UTC](https://rcop.michaeljfox.org/t/intro-to-adni-and-adnimerge-for-ad-pd-researchers/993 "2025-06-10T15:18:16Z")
ADNI & adnimerge for AD/PD Researchers If you’re familiar with PPMI or other datasets hosted at LONI, you’ve likely come across the ADNI dataset as well. While ADNI is primarily designed for Alzheimer’s research, its ric… --- ## [Ancestry/Ethnicity in Tier 1 Genetic Data](https://rcop.michaeljfox.org/t/ancestry-ethnicity-in-tier-1-genetic-data/1010)
**Author:** [@abdulrehman.muhammad](https://rcop.michaeljfox.org/u/abdulrehman.muhammad)\ **Replies:** 2\ **Last updated:** [May 27, 2025, 11:54pm UTC](https://rcop.michaeljfox.org/t/ancestry-ethnicity-in-tier-1-genetic-data/1010 "2025-05-27T23:54:18Z")
Hi, I am working on GI and PD research and would like to utilize the MJFF data for 17 FIGS Priority SNPs under Tier 1 access. I want to account for ethnicity/ancestry and was confused as to the source of this ethnicity/… --- ## [Getting Started With PD Data Webinar](https://rcop.michaeljfox.org/t/getting-started-with-pd-data-webinar/975)
**Author:** [@malosco](https://rcop.michaeljfox.org/u/malosco)\ **Replies:** 7\ **Last updated:** [May 13, 2025, 10:54pm UTC](https://rcop.michaeljfox.org/t/getting-started-with-pd-data-webinar/975 "2025-05-13T22:54:47Z")
Are you interested in conducting research with PD data but are unsure where to start? If so, we hope that you will join us on Thursday, May 8th from 2:00-3:00pm EST for a webinar focused on wrangling PD data. This webin… --- ## [Open Science Guide](https://rcop.michaeljfox.org/t/open-science-guide/810)
**Author:** [@mattk](https://rcop.michaeljfox.org/u/mattk)\ **Replies:** 12\ **Last updated:** [May 12, 2025, 6:06pm UTC](https://rcop.michaeljfox.org/t/open-science-guide/810 "2025-05-12T18:06:14Z")
Hi DCOP! I’m leading a project on writing a high-level open science guide for Parkinson’s disease researchers as part of the Data Modality & Methodology task force. I’m seeking feedback, ideas, resources, etc. on a docu… --- ## [AD/PD 2025 - FNIH session](https://rcop.michaeljfox.org/t/ad-pd-2025-fnih-session/978)
**Author:** [@ehutchins](https://rcop.michaeljfox.org/u/ehutchins)\ **Replies:** 1\ **Last updated:** [April 23, 2025, 10:47am UTC](https://rcop.michaeljfox.org/t/ad-pd-2025-fnih-session/978 "2025-04-23T10:47:49Z")
The 2025 AD/PD Conference (April 1st - 5th, Vienna) was a great meeting all around. @AmgadDroby wrote up a nice overview of highlights from the meeting. I wanted to highlight the FNIH session in particular - there were … --- ## [Anyone worked with ExpansionHunter for repeat expansions in Parkinsonism?](https://rcop.michaeljfox.org/t/anyone-worked-with-expansionhunter-for-repeat-expansions-in-parkinsonism/966)
**Author:** [@psaffie](https://rcop.michaeljfox.org/u/psaffie)\ **Replies:** 2\ **Last updated:** [April 8, 2025, 8:29pm UTC](https://rcop.michaeljfox.org/t/anyone-worked-with-expansionhunter-for-repeat-expansions-in-parkinsonism/966 "2025-04-08T20:29:49Z")
Hi @researchcommunity !!! I was wondering if anyone could give me some advice. I’ve been running ExpansionHunter on a cohort of patients with Parkinsonian features to screen for repeat expansions that might be flying un… --- ## [Additional PD cohorts to be aware of and how to access them](https://rcop.michaeljfox.org/t/additional-pd-cohorts-to-be-aware-of-and-how-to-access-them/561)
**Author:** [@danieltds](https://rcop.michaeljfox.org/u/danieltds)\ **Replies:** 1\ **Last updated:** [September 4, 2024, 8:10pm UTC](https://rcop.michaeljfox.org/t/additional-pd-cohorts-to-be-aware-of-and-how-to-access-them/561 "2024-09-04T20:10:25Z")
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 … --- ## [Data Wrangling Guide Task Force](https://rcop.michaeljfox.org/t/data-wrangling-guide-task-force/219)
**Author:** [@ehutchins](https://rcop.michaeljfox.org/u/ehutchins)\ **Replies:** 25\ **Last updated:** [June 10, 2024, 7:32pm UTC](https://rcop.michaeljfox.org/t/data-wrangling-guide-task-force/219 "2024-06-10T19:32:51Z")
We want to introduce the Data Wrangling Guide Task Force, led by myself and @malosco, to the @DCoP\_Innovators and invite anyone to join. We would like the task force to be collaborative - we have met and identified goals… --- ## [Looking for CSF glucocerebrosidase activity in PPMI](https://rcop.michaeljfox.org/t/looking-for-csf-glucocerebrosidase-activity-in-ppmi/428)
**Author:** [@gdp22](https://rcop.michaeljfox.org/u/gdp22)\ **Replies:** 5\ **Last updated:** [May 16, 2024, 6:40pm UTC](https://rcop.michaeljfox.org/t/looking-for-csf-glucocerebrosidase-activity-in-ppmi/428 "2024-05-16T18:40:09Z")
Hi all, I am interesting in learning if CSF glucocerebrosidase activity is in the PPMI dataset at any timepoint. Any guidance would be appreciated. I have found this in AMP-PD from Clemens Scherzers dataset, but it is… --- ## [GitHub Platform](https://rcop.michaeljfox.org/t/github-platform/239)
**Author:** [@psaffie](https://rcop.michaeljfox.org/u/psaffie)\ **Replies:** 4\ **Last updated:** [February 26, 2024, 6:06pm UTC](https://rcop.michaeljfox.org/t/github-platform/239 "2024-02-26T18:06:22Z")
Hi there @DCoP\_Innovators !!! I was wondering, anyone with experience in GitHub? Maybe it would be interesting, if some of the most experienced ones in GitHub could share some tips and experiences for uploading a code a… --- ## [A brief introduction on UK Biobank](https://rcop.michaeljfox.org/t/a-brief-introduction-on-uk-biobank/334)
**Author:** [@danieltds](https://rcop.michaeljfox.org/u/danieltds)\ **Replies:** 1\ **Last updated:** [February 13, 2024, 1:37pm UTC](https://rcop.michaeljfox.org/t/a-brief-introduction-on-uk-biobank/334 "2024-02-13T13:37:36Z")
Introduction Have you ever heard of the UK Biobank? Although I haven’t had the opportunity to access it yet - since it requires a paid subscription or access through an institution, which I have not yet requested - I mu… [Next page](https://rcop.michaeljfox.org/tag/data-access/27.md?match_all_tags=true&page=1&tags%5B%5D=data-access)