It Takes A Village: Gratitude for Our DataCite Journey
Boyce, Danielle
- Publisher
- Zenodo
- Language
- en
Abstract
This presentation shares the journey of the ALS Therapy Development Institute (ALS TDI) in adopting and integrating DataCite services to support its mission of accelerating the discovery of treatments for Amyotrophic Lateral Sclerosis (ALS). It outlines why ALS TDI joined DataCite, how persistent identifiers enhance their research infrastructure, and the challenges DataCite helps address in managing, sharing, and contextualizing complex real-world data. The presentation provides an overview of the ALS Research Collaborative (ARC), a comprehensive program that collects longitudinal self-reported data, digital measurements, biological samples, whole-genome sequencing, and integrated electronic health records from people living with ALS. It highlights how DataCite DOIs and metadata improve data discoverability, support global data sharing through the ARC Data Commons, and foster collaboration across the research community. Through this case study, the presentation illustrates how persistent identifiers play a critical role in building trustworthy, interoperable, and impactful research ecosystems. A recording of the presentation is available on the DataCite YouTube channel: https://www.youtube.com/watch?v=aUKrGLiDyqA&t=1300s
Full text
It Takes A Village: Gratitude for Our DataCite Journey Danielle Boyce, MPH, DPA Principal Investigator, Real World Evidence
Overview •Why we joined DataCite •How we use DataCite services •Challenges DataCite helps us address
OUR MISSION IS TO DISCOVER AND INVENT TREATMENTS FOR EVERYONE WITH ALS
About ALS TDI •First-ever nonprofit biotech in ALS - founded in 1999 by the Heywood family. •We are the most comprehensive drug discovery lab in the world focused solely on ALS.
•Inclusion: anyone with ALS or asymptomatic gene carriers •All data can be submitted from home. •Phlebotomist sent to the home •Participants portal: disease progression data The ARC Study: Your Story. Our Science. Building Hope in ALS Research
We gather comprehensive data from people with ALS. We share this deidentified data with researchers around the world. Components of ARC ARC Study ARC Data Commons
Personal Background ALSFRS-R tracking Speech Tracking Movement Tracking Sample Collection Data collected in the ARC Study Whole Genome Sequencing Electronic health records
Electronic Health Record Integration Participants have the option to easily integrate their Electronic Health Records (EHRs) into the ARC Study. An EHR is an electronic version of a participant’s medical and care history. Electronic Health Records
Self-Reported ARC Participation ONLY Diagnosed with ALS 0 Months *ALSFRS and digital data are submitted monthly 3 Months 6 Months •Sign up Questionnaire •Familyhistory •ALSFRS-R •Blood Sampling •Whole Genome Sequencing •Medications •Lifestyle •Occupation •Injuries •Geography 9 Months •Digital data •Plasma •Serum •PBMC •Whole Blood •RNA 12 Months •Digital data •Plasma •Serum •PBMC •Whole Blood •RNA 15 Months •Digital data •Plasma •Serum •PBMC •Whole Blood •RNA Enrolled in ARC Study ALSFRS-R Surveys* ALSFRS-R Surveys* ALSFRS-R Surveys* Self Reported Data
https://rwd.guide/ -
Thank you. Questions? linkedin.com/in/data-danielle dboy[email protected]
