The Initiative

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.

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’ve developed a strategic roadmap to collectively tackle field-wide challenges together.

COLLABORATION

The Aligning Science Across Parkinson’s (ASAP) initiative is devoted to accelerating the pace of discovery and informing the path to a cure for Parkinson’s disease through collaboration, research-enabling resources, and data sharing.

Support Collaboration

Fund international multidisciplinary teams to encourage the exchange of ideas, foster innovation, and catalyze new experimental approaches.

Generate Resources

Build infrastructure to support the next generation of Parkinson’s research through genetic analysis efforts, training support, natural history studies, and other research tools.

Share Data

Implement open science policies to ensure that ASAP-funded research, outputs, and tools can be leveraged by the broader community.

Scientific Themes

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 Initative
  • 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 currently supports five programs that help fuel mechanistic research and enable biomarker studies, with the goal of advancing research for the benefit of the entire Parkinson’s community.  Learn more about our supported programs here

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With Thanks to Our Implementation Partner

With Thanks to Our Collaborators

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