For too long, people with Parkinson’s disease have suffered without a meaningful therapy to treat its underlying cause.
With rapid advances in areas like genomics, single-cell technologies, and data analytics, we’re at a tipping point to better understand this devastating disease – but we can’t do it alone.
Aligning Science Across Parkinson’s (ASAP) builds on the significant strides made by the research community, funders, other experts, and strategists around the world. With input across sectors and disciplines, we are implementing a strategic roadmap to collectively tackle field-wide challenges together.
ASAP’s mission is to accelerate the pace of discovery and inform the path to a cure for Parkinson’s disease (PD) through collaboration, research-enabling resources, and data sharing.
ASAP Theory of Change
At ASAP, we apply a Theory of Change framework, which allows us to cohesively and comprehensively measure progress – from idea to result – in the context of our overarching vision. Further, it enables us to reflect upon and iterate processes as we measure our progress to date. Our work is broken down into the three main components of our mission: collaboration, resource generation, and data sharing, which underpin our strategies for accelerating discoveries for PD.
SUPPORT COLLABORATION
Scientific progress can be accelerated when researchers exchange ideas early and often, in a collaborative rather than competitive manner.
GENERATE RESOURCES
By supporting resource development, we are building an infrastructure, available to the larger scientific community, that improves access to research tools, reproducibility of studies, and process efficiency to accelerate discoveries.
SHARE DATA
By sharing research outputs like data, code, and protocols, we are allowing researchers to build upon the work of others. This facilitates collaboration among investigators, attracts new talent and expertise to the field, and allows us to increase the power of our studies through meta-analysis.
ACCELERATE DISCOVERIES
We believe that by supporting collaboration, facilitating research, enabling resource generation, and creating a culture of data sharing, we can deliver faster and better outcomes for Parkinson’s disease research.
Programmatic Objectives
Across our programs, we are driven by the following objectives:
- Funnel new ideas into the PD research and development pipeline
- Facilitate the rapid and free exchange of ideas
- Ensure the work we fund can be leveraged by others
- Contribute to the next generation of PD researchers
Scientific Themes
We currently focus on the following key areas:
PD Functional Genomics
The effect of genetic alterations on disease biology
Neuro-Immune Interactions
The molecular and cellular contributions of the neuro-immune system
Circuitry and Brain-Body Interactions
The underlying neuronal circuit dynamics and interface with the periphery
Progression: A Cross-Cutting Theme
The role of heredity, neuro-immune factors, and circuit-level alterations on disease progression
Guiding Principles
ASAP is guided by the belief that research outcomes will be improved through the following principles:
Collaboration
Given the multifactorial nature of Parkinson’s disease, charting a new path will require multidisciplinary cooperation from investigators with and without a previous record of PD research.
Creativity
Philanthropic capital has the most impact in areas that are deemed unpopular, high-risk, or out-of-scope for government funding, requiring creative and thoughtful consideration of research.
Flexibility
As roadmap goals are implemented, we will be responsive to the evolving nature of research and adjust focus as deemed appropriate.
Transparency
To accelerate research, we’ll support the free flow of data and resources within our collaborative network and make findings available to the broader community.
The Road to ASAP
Starting in 2017, we engaged more than 100 multidisciplinary experts and strategists to inform our strategic roadmap and thoughtfully guide future investments in scientific discovery.
2017
Planning
This meeting brought the ASAP Planning Advisory Council together to kick off the two-year planning process. The Planning Council comprised both PD and non-PD experts from academia, industry, government, and the patient community to guide strategic roadmap development through a multi-disciplinary and multi-stakeholder lens. We focused on candidate scientific themes, as well as opportunities, challenges, and considerations for the path ahead.
Attendees
James Beck, Parkinson’s Foundation
Patrik Brundin, Van Andel Research Institute (VARI)
Marie-Francoise Chesselet, University of California at Los Angeles
Martin Citron, UCB Pharma
Ted Dawson, Johns Hopkins University School of Medicine
Pietro De Camilli, Yale School of Medicine
David Dexter, Imperial College London
Thomas Gasser, German Center for Neurodegenerative Diseases
Magali Haas, Cohen Veterans Bioscience
Karl Kieburtz, University of Rochester Medical Center
Walter Koroshetz, National Institute of Neurological Disease and Stroke
Kelsey Martin, University of California at Los Angeles
Karoly Nikolich, Alkahest
C. Warren Olanow, Mount Sinai School of Medicine
Bernardo Sabatini, Harvard Medical School
Darryle Schoepp, Merck and Company
Todd Sherer, The Micheal J. Fox Foundation for Parkinson’s Research
Andrew Singleton, National Institute on Aging, NIH
Beth Stevens, Harvard Medical School
David Sulzer, Columbia University Medical Center
Development
This meeting convened the ASAP Planning Advisory Council to discuss a framework by which key knowledge gaps within the candidate scientific themes could be addressed. Strategically, it was recommended that we build on known areas (i.e., candidate scientific themes) by filling in the gaps left by public funding and uncover unknown areas through large, unbiased data collection and analysis.
Attendees
James Beck, Parkinson’s Foundation
Patrik Brundin, Van Andel Research Institute (VARI)
Marie-Francoise Chesselet, University of California, Los Angeles
Ted Dawson, Johns Hopkins University School of Medicine
David Dexter, Imperial College London
Thomas Gasser, German Center for Neurodegnerative Diseases
Magali Haas, Cohen Veterans Bioscience
Karl Kieburtz, University of Rochester Medical Center
Walter Koroshetz, National Institute of Neurological Disease and Stroke
Robert Malenka, Stanford University School of Medicine
Kelsey Martin, University of California, Los Angeles
Karoly Nikolich, Alkahest
C. Warren Olanow, Mount Sinai School of Medicine
Bernardo Sabatini, Harvard Medical School
Randy Schekman, University Of California, Berkeley
Darryle Schoepp, Merck and Company
Todd Sherer, The Micheal J. Fox Foundation for Parkinson’s Research
Andrew Singleton, National Institute on Aging, NIH
David Sulzer, Columbia University Medical Center
Huda Zoghbi, Baylor College of Medicine
We hosted over 100 attendees during this reception held at the Society for Neuroscience Annual Meeting. A feature fireside chat between Melissa Stevens of the Milken Institute Center for Strategic Philanthropy, and George Pavlov of the Sergey Brin Family Foundation, publicly introduced the ASAP initiative to the broader neuroscience community, discussed intent and the role that philanthropy can play to propel discovery, and sought feedback from attendees.
2018
Primed with months of advance preparation in working groups, this international workshop brought together over 70 academic and industry investigators, public and private funders, as well as patients and advocates from across disciplines to design conceptual research programs that addressed a prioritized list of knowledge gaps within the selected scientific themes. A discussion of resource and infrastructure needs was a key component of each program.
Attendees
Matthew Ackerman, MBA
Dario Alessi, University of Dundee
James Beck, Parkinson’s Foundation
Elizabeth Bradshaw, Columbia University
Latese Briggs, Milken Institute Center For Stragetig Philanthropy
Katja Brose, Chan Zuckerberg Initiative (CZI)
Patrik Brundin, Van Andel Research Institute (VARI)
Edward Callaway, The Salk Institute
Paul Cannon, 23andMe, Inc.
Honglei Chen, Michigan State University
Joanne Chory, The Salk Institute
Martin Citron, UCB Pharma
Mark Cookson, National Institute on Aging (NIA)
Ted Dawson, John Hopkins University School of Medicine
Pietro De Camilli, Yale School of Medicine
Michel Desjardins, University of Montreal
Steve Finkbeiner, University of California, San Francisco
Thomas Gasser, German Center of Neurodegenerative Diseases
Viviana Gardinaru, California Institute of Technology
Tim Greenamyre, University of Pittsburgh School of Medicine
Magali Haas, Cohen Veterans Bioscience
Erika Holzbaur-Howland, University of Pennsylvania School of Medicine
Elaine Hsiao, University of California at Los Angeles
Anthony Hyman, Max Planck Institute of Molecular Cell Biology and Genetics
H. Shawn Je, Duke-National University of Singapore Medical School
Kirstie Keller, Milken Institute Center For Strategic Philanthropy
Johnathan Kipnis, University of Virginia Medical School
Jeffrey Kordower, Rush Medical College
Dimitri Krainc, Feinberg School of Medicine at Northwestern University
Anatol Kreitzer, University of California at San Francisco
Arnold Kriegstein, University of California at San Francisco
Thomas Kukar, Emory University School of Medicine
Jin Hyung Lee, Stanford University School of Medicine
Shane Liddlelow, New York University Neurosciences Institute
Byungkook Lim, University of California at San Diego
Robert Malenka, Stanford University School of Medicine
Kenneth Marek, Institute of Neurodegenerative Disorders
Kelsey Martin, University of California at Los Angeles
Sarkis Mazmanian, California Institute of Technology
Heidi McBride, McGill University
K. Kimberly McCleary, Center of the Milken Institute
Miratul Muqit, University of Dundee
Karoly Nikolich, Alkahest
Alastair Reith, GlaxoSmithKline Pharmaceuticals
Ekemini Riley, Milken Institute Center of Strategic Philanthropy
Randy Schekman, University of California at Berkeley
Clemens Scherzer, Harvard Medical School
John Siebyl, inviCRO, LLC.
Alessandro Sette, La Jolla Institute for Allergy and Immunology
Todd Sherer, The Michael J. Fox Foundation for Parkinson’s Research
Andrew Singleton, National Insititute on Aging, NIH
Frank Soldner, Massachusetts Institute of Technology (MIT)
Benjamin Stecher, Tomorrow Edition Blog
Melissa Stevens, Milken Institute Center for Strategic Philanthropy
David Sulzer, Columbia University Medical Center
D. James Surmeier, Northwestern University
Margaret Sutherland, National Institute for Neurological Disease and Stroke (NINDS)
Caroline Tanner, University of California, San Francisco School of Medicine
Malú Tansey, Emory University School of Medicine
Daniel Wesson, University of Florida College of Medicine
Su-Chun Zhang, Duke-National University of Singapore Medical School
This forum sought to cultivate a learning community of peer funders and program leaders in neuroscience to explore ways that we can all work together to address this neurological disease. We discussed funding priorities and gleaned lessons learned to avoid unnecessary duplication of efforts.
Attendees
James Beck, Parkinson’s Foundation
Niranjan Bose, Gates Ventures
Patrick Brannelly, Rainwater Charitable Foundation
Latese Briggs, Milken Institute Center For Strategic Philanthropy
Katja Brose, Chan Zuckerberg Initiative (CZI)
Rosa Canet-Avilés, Foundation for the NIH
Valerie Conn, Science Philanthropy Alliance
Jonah Cool, Chan Zuckerberg Initiative
Rick Howitz, Allen Institute for Cell Science
Brett Holleman, Van Andel Research Institute
Ehud Isacoff, University of California at Berkeley
John Lehr, Parkinson’s Foundation
Karoly Nikolich, Alkahest
George Pavlov, Bayshore Global Management
Louis Reichardt, Simons Foundation for Autism Research Initiative (SFARI)
Ekemini Riley, Milken Institute Center For Strategic Philanthropy
Amy Rommel, Rainwater Charitable Foundation
Randy Schekman, University of California at Berkeley
Todd Sherer, The Micheal J. Fox Foundation for Parkinson’s Research
Thomas Snyder, Verily Life Sciences
Melissa Stevens, Milken Institute Center For Strategic Philanthropy
Margaret Sutherland, National Institute for Neurological Disease and Stroke (NINDS)
Jason Tung, Science Philanthropy Alliance
2019
Launch ASAP Initiative
- Announced first CRN funding opportunity
- Supported AMP® PD
- Joined cOAlition S, the international body championing open access
2020
- Launched the GP2 initiative
- Supported the expansion of PPMI
- Continued supporting AMP® PD
- Announced the first-round grantees of the CRN
- Announced second CRN funding opportunity
2021
- Supported the expansion of the iPSC Neurodegenerative Diseases Initiative for PD (iDNI-PD)
- Developed a custom Research Output Management System
- Began cataloging and sharing outputs across the network
- Announced the second round of CRN grantees later in the year
- Joined the Open Research Funders Group (ORFG)
2022
- Launched the GP2 cohort dashboard to track our progress in processing samples and sharing data through AMP® PD
- Posted over 75 research preprints across the programs
- Hosted over 50 virtual research meetings throughout the year and the first in-person meetings for the CRN and GP2 since the pandemic
- Released an external Research Catalog on the ASAP website
- Supported the development of a new biological staging hypothesis for PD through PPMI datasets
- Launched a PPMI Zenodo community to share findings earlier with researchers
- Piloted the use of early-release lines through iNDI-PD
- Continued to support AMP® PD and its collaboration, resource generation, and data sharing efforts
- Released the ASAP Blueprint for Collaborative Open Science
2023
- Discovered a new GBA1 gene variant identified in a Nigerian population through collaboration with GP2, the International Parkinson’s Disease Genomics Consortium (IPDGC) Nigerian chapter, The Michael J. Fox Foundation, and 23andMe
- Supported a new test known as the alpha-synuclein seed amplification assay (αSyn-SAA) for early diagnosis of Parkinson’s disease, which was validated through PPMI and set the stage for conceptualizing a new biological staging paradigm for PD
- Published 110+ research articles across ASAP programs
- Uploaded GP2’s 4th and 5th data releases on the AMP® PD platform; in total, 24,935 GP2 samples have been shared
- Supported the download of PPMI datasets; since PPMI’s launch, datasets have been downloaded over 17 million times
- Supported AMP® PD’s release of seven different community workspaces to support open data analysis in the PD research community
- Launched the Care & Career Program to provide childcare stipends of up to $10,000 per household to support the retention of graduate students and early-career researchers in neuroscience; 99 CRN members were supported
- Hosted 2 Collaborative Meetings in San Diego and London for more than 400 members of the CRN
- Hosted GP2’s second Annual Investigators Meeting in Copenhagen for more than 270 members of the GP2 network
- Hosted 50+ virtual events
- Launched a pilot program with CatalystNeuro to build out bespoke conversion pipelines to the Neurodata Without Borders (NWB) format and allow easy archiving of these datasets onto DANDI, the NIH BRAIN initiative-sponsored neurophysiology repository
- Awarded a joint contract between DNAStack, Datatechnica International, and Verily to support the development of a cloud-based solution for ASAP-generated human postmortem brain-derived omics data
- Supported the development of diverse PD genetic datasets in the global research community, including GP2 partnering with 76 member institutions, establishing new GP2 cohorts in underrepresented countries, expanding the BLAAC PD study through the addition of four new sites, and partnering with a new VET-PD cohort, which will contribute to PD knowledge among veterans
- Expanded the external research Catalog to over 1,000 outputs and launched the Protocol Particulars interview series on our website to highlight and share information about ASAP-generated protocols and authors
- Supported our grantees by providing over 150+ compliance reports, ensuring that research outputs are registered, deposited, and publicly linked in final publications
- Released our manuscript “From Policy to Practice: Tracking an Open Science Funding Initiative” which outlines ASAP’s open science compliance monitoring process
Funded Programs
ASAP collaborates with organizations and supports programs to help implement our vision. Together, our collective commitment to better understand the underlying causes of PD will allow us to accelerate discoveries and inform the path to a cure.
Our Management Organization
Coalition for Aligning Science, an organization with a track-record for designing and implementing large-scale biomedical research programs to accelerate discoveries, serves as the managing entity, setting the strategy and vision for the ASAP initiative.
Our Implementation Partner
The Michael J. Fox Foundation for Parkinson’s Research, a nonprofit, with a track record for operational excellence and commitment to accelerating the next generation of Parkinson’s disease treatments, serves as the implementation partner.