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A Funder-Led Approach to Open Science

The open science policy of Aligning Science Across Parkinson’s (ASAP) supports collaboration, shared research resources and data openness to accelerate progress in Parkinson’s disease research.

Image: ASAP, reproduced with permission

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ASAP stands for Aligning Science Across Parkinson’s. In a time when funding for science is in danger, ASAP provides support for scientific work spanning basic, translational, and clinical research. ASAP is the flagship initiative for the Coalition for Aligning Science (CAS), an organization that implements large-scale scientific research programs by focusing on multi-sector collaboration to build a culture that incorporates open science principles from the design stage.


From the outset, ASAP has collaborated closely with its implementation partner, The Michael J. Fox Foundation for Parkinson’s Research, to meet their ultimate goal of accelerating the pace of discovery for Parkinson’s disease. According to ASAP’s deputy director Cornelis Blauwendraat, Ph.D.:


“If we want to solve something as complex as Parkinson’s disease, we can’t afford to work in silos. Too often, sharing accessible and reusable research processes and outputs is an afterthought. But for ASAP, open science isn’t about checking a box.”

Cornelis Blauwendraat, Aligning Science Across Parkinson’s



Providing Support for Open Science

ASAP is not the only organization to implement an open science policy for grantees. However, one thing that sets ASAP apart is that it actively supports and monitors the workflows that help researchers champion open science practices. With such an ambitious goal, the focus on infrastructure is key and requires continued, concerted effort that allows each initiative to address large gaps in knowledge. Cornelis Blauwendraat explains that:


“Our approach is to front-load that work so that every discovery, and the building blocks that enable the discovery, such as data, code, and protocols, become a resource for the field as quickly as possible. That’s how we move beyond the capabilities of a single lab and build the research community needed to tackle neurodegenerative conditions.”

Cornelis Blauwendraat, Aligning Science Across Parkinson’s



In practice, this support is evident in ASAP’s searchable catalog of funded outputs and key lab materials, made available for anyone to explore. Through the Global Parkinson's Genetics Program (GP2), ASAP also invests in researcher development through free online training courses and in-person training sessions covering Parkinson's disease genetics, tools to support open science practices, and sound research methods (see some of their course offerings below).




Research

Methods I




Introduction

to Python



Beginner Bioinformatics for Parkinson’s Disease Genetics



WGS Data Analysis





ASAP takes a much more involved role in the daily research process than most other funders. CAS open science consultant Robert Thibault, Ph.D., explains that ASAP provides funds for a project manager to be the point of contact for each funded program, so that the conversation between funder and grantee is continually happening. The role of this key person is to take on the administrative burden associated with complying with the tenets of open science and ASAP’s key requirements, which are:


  • Share all research outputs (preprints, open access research publications, data, code & software, protocols, and lab materials) by time of publication.

  • Identify all research inputs in final publication.

  • Ensure immediate open access.

  • Acknowledge ASAP.

  • Share outputs with the ASAP network.






Learn More About ASAP Theory of Change and History






Partnerships That Work

The major structural challenges to the implementation of this extended open science policy have been previously outlined. In response, ASAP has focused on establishing partnerships with both public and privately held organizations to ensure critical resources are available to its grantees. While sharing preprints has no associated costs, the way in which ASAP managed the potential costs borne by its broader requirements was recently described. One such partnership is with DataSeer. This service generates an itemized list of all research outputs and inputs, if and how they are shared, and what still needs to be shared.

This compliance report is hosted in Google Sheets and also provides information to grantees about licensing, ORCID iDs and affiliations, and whether or not research outputs have already been shared on a private, virtual platform for ASAP’s grantees. Importantly, to ensure research tools and models are readily available to the scientific community with minimal barriers to access, ASAP has partnered with the MJFF Research Tools Program to help facilitate and oversee sharing of lab materials, including support with materials transfer agreements.


The deposition and unambiguous identification of research outputs significantly increases between the version of a manuscript first shared with ASAP staff and the associated final publication. Listening and incorporating the feedback of grantees into compliance workflows is of the utmost importance to maintain their engagement. For example, some grantees found it difficult to accurately track research outputs within their manuscripts, so ASAP developed a key resources table template to assist them. The format of such tables builds on the work of SciCrunch, and these are then uploaded to Zenodo, where they receive a persistent identifier.



Global Reach

The numbers speak for themselves—ASAP funded research has generated more than 3,100 research outputs, which are housed in ASAP’s online catalog. These outputs come from three supported programs: the GP2, the Collaborative Research Network (CRN), and the Parkinson’s Progression Marker’s Initiative (PPMI). Each of ASAP’s programs touches regions across the world.


Although some studies are limited in geography due to strategic limitations, several funding calls have been global. For instance, to learn more about the genetic architecture of Parkinson’s disease across the world, the GP2 has gathered over 100,000 genotyped samples from over 150,000 volunteers worldwide. To date, there are more than 300 cohorts from over 70 countries and territories, including Africa, Asia, and Latin America.


The Collaborative Research Network funds 35 research teams, across 80 institutions, in 14 countries. In 2025, it opened two global funding calls focused on studying Parkinson’s disease heterogeneity and tool generation, to augment three priority research areas in functional genomics, neuro-immune interactions, and circuitry and brain-body interactions. This network counts with additional support in the form of data managers, whose functions include helping researchers translate their complex data into shareable formats.


ASAP’s support of the PPMI permitted recruiting in excess of 4,000 participants to the clinical cohort. This observational study collects biological samples coupled to imaging and clinical data, such as the smell test (see below), to characterize the changes the body goes through as Parkinson’s progresses.






Beyond the Funded Research

ASAP prides itself on providing researchers with the tools that allow them to trace the basis of a scientific claim, as mentioned during the 10th Peer Review Congress. Speaking to us directly, Robert Thibault concedes that this is no small task. In trying to change the culture of how research is disseminated and shared, he hopes that the practices learned by the researchers working with ASAP can be continued as they move from these projects, and spread throughout the whole Parkinson’s community. Listening to what is needed to meet requirements and providing support in obtaining skills and resources is essential.


ASAP does not shy away from higher risk/higher reward projects. One such example is the discovery of a risk variant in the GBA1 gene for populations of African ancestry. The data and materials stemming from this were later used by other researchers that linked the increased Parkinson’s disease severity in carriers of this variant with impaired Saposin C enzymatic activity.


But being able to communicate the importance of these projects to the public is also paramount, and ASAP has a dedicated communications team. For example, for the discovery of the GBA1 variant, ASAP participated in news stories with the BBC Health Check, NPR, and PBS NewsHour. The organization also leverages the existing infrastructure in patient advocacy groups that help translate novel findings to those that are most in need of them.


ASAP routinely uses its websites, email newsletters, video content, and social media channels to provide regular updates on work from across its programs and its global network of investigators. To reach a variety of audiences, researchers from the initiative also participate in podcast interviews, where they engage with major media outlets on significant research milestones.


ASAP's model shows that open science is not simply a set of policies to endorse, but a practice that requires resources, oversight, and sustained commitment. By weaving open science into how it funds and supports research, ASAP offers a concrete example that the broader funding community can learn from.


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© 2026 Science Integrity Alliance.

This article is open access, published under a Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) license. You may share and adapt it for noncommercial purposes, with credit to the author and to REACH. Images, illustrations, logos and other third-party material are not covered by this license unless the caption says otherwise. Permission for these must be sought from the rights holder.


Cite As

Maria Machado, Luciana Machado. A Funder-Led Approach to Open Science. REACH 2026; 3 (January-March): 48-53.

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