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Why Open Source Drug Discovery Needs a “Champion”. Sean Ekins , Ph.D., D.Sc. Collaborations In Chemistry, Fuquay Varina , NC . Inspiration. Jill Wood –Jonah’s Just Begun Lori Sames – Hannah’s Hope Fund Allison Moore – Hereditary Neuropathy Foundation

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Why open source drug discovery needs a champion

Why Open Source Drug Discovery Needs a “Champion”

Sean Ekins, Ph.D., D.Sc.

Collaborations In Chemistry,

Fuquay Varina, NC


Inspiration
Inspiration

  • Jill Wood –Jonah’s Just Begun

  • Lori Sames – Hannah’s Hope Fund

  • Allison Moore – Hereditary Neuropathy Foundation

  • Alex Clark – Molecular Materials Informatics

  • Antony Williams – Royal Society of Chemistry


Open Source Drug Discovery (OSDD) is the concept of drug discovery where all data and ideas are shared in real time, and anyone may participate at any level.

This prior disclosure means that there will be no patents and that any technology is both academically and commercially exploitable by whoever wishes to do so.

Insert disease of choice here

Learning from OSDD TB and Malaria efforts


The big ask
The Big Ask discovery where all data and ideas are shared in real time, and anyone may participate at any level.

  • Can we do something that helps people become champions of Open Source Drug Discovery


The problem opposites attract
The Problem – Opposites Attract discovery where all data and ideas are shared in real time, and anyone may participate at any level.

  • Neglected & Rare Diseases

Bacteria, Parasites etc Genetic mutations etc

A handful of diseases

Biology well known

Millions die – affects poor

No incentive for pharma

Treatments need to be cheap (cents)

Thousands of diseases

Biology not well known

Affects 10s- 1000s per disease – affects rich

Pharma targeting bigger rare diseases

Treatments need to be expensive $1M/yrpp


Neglected diseases
Neglected Diseases discovery where all data and ideas are shared in real time, and anyone may participate at any level.

  • BMGF funded these and now more research efforts ongoing


Neglected diseases1
Neglected Diseases discovery where all data and ideas are shared in real time, and anyone may participate at any level.

  • Many researchers chasing a relatively small amount of funding for a handful of diseases

  • Difficult to treat, faster cures elusive

  • Massive clinical trials needed


Rare diseases
Rare Diseases discovery where all data and ideas are shared in real time, and anyone may participate at any level.


Rare diseases1
Rare Diseases discovery where all data and ideas are shared in real time, and anyone may participate at any level.

  • Very few researchers chasing >7000 diseases. Funding likely a long tail.

  • Relatively easy to treat. At the forefront of gene therapy resurgence

  • Only miniscule clinical trials possible


This is jonah s story
This is Jonah’s Story discovery where all data and ideas are shared in real time, and anyone may participate at any level.

  • He needs a cure for MPS IIIC and fast

  • Researchers just developed a KO mouse funded by Sanfilippo foundations globally

  • Searching for small molecule therapy

  • Working on gene therapy

  • Treatment years away


Scientists chase funding through crowdfunding
Scientists Chase Funding Through discovery where all data and ideas are shared in real time, and anyone may participate at any level. Crowdfunding

Ethan raised to $25K using crowdfunding to fund research on methamphetamine

Other bigger team projects have raised $100’sK


Parents funding scientists to cure their children though crowdfunding
Parents Funding Scientists To Cure Their Children Though discovery where all data and ideas are shared in real time, and anyone may participate at any level. Crowdfunding


The rare disease parent odyssey
The Rare Disease Parent Odyssey discovery where all data and ideas are shared in real time, and anyone may participate at any level.

  • Diagnosis of child

  • Try to find out about disease – papers behind paywall

  • Try to connect with scientists

  • Form not-for-profit

  • Raise funds

  • Fund Scientific research on disease

  • Advocate for support from NIH, FDA etc

  • Start a company

  • Try to find a cure before its too late


Let me repeat a parent patient advocate with no ph d can do all this
Let me repeat….A Parent/ Patient Advocate with discovery where all data and ideas are shared in real time, and anyone may participate at any level. no Ph.D. can do all this

  • Start a foundation

  • Raise funds

  • Become an expert on their/childs disease

  • Set up a scientific advisory board

  • Fund scientific projects

  • Submit NIH grants

  • Start a company

  • Leverage social media, traditional media


P roposal
P discovery where all data and ideas are shared in real time, and anyone may participate at any level. roposal

Why don’t we apply Open Source Drug Discovery to Rare diseases as well as neglected diseases??


Examples of open science and tools to share openly

Examples of Open Science and Tools to Share Openly discovery where all data and ideas are shared in real time, and anyone may participate at any level.

Linked Open

data cloud

2011 (Wikipedia)


A mobile app for open drug discovery

Open Drug Discovery Teams – brings data from Twitter and the internet together

A Mobile App for Open Drug Discovery

Aflipboard for science #ODDT

Embraced by rare disease advocates

Getting people to share data openly is a challenge

NIH SBIR reviewers want closed systems to preserve IP

Developed with Alex Clark


Challenges of open source drug discovery

Challenges of the internet togetherOpen Source Drug Discovery

Tools, Systems, IP concerns, organizational support


What is needed
What is needed? the internet together

  • “Helpers” to take the weight off the parent/patient

  • How to manage the complex data?

  • How to make sense of the literature?

  • How to foster collaboration?

  • How to leverage what is learnt from other diseases?

  • How scientists find funding or projects to work on?

  • How parents find scientists to solve their problems?

  • How to accelerate the process of discovery?


Support human champions with software and systems
Support human Champions with software and systems the internet together

This could be you here

  • Parents need expert advice

  • Drug Discovery advice

  • Preclinical advice

  • Awareness of research outside of their disease


Support human champions with software and systems1
Support human Champions with software and systems the internet together

Helpers

  • To share and store the data they are funding

  • To network with others doing the same for other diseases

  • Bring scientists and parents/patients together

  • To rank scientists for funding their research


Extend from rare to neglected diseases
Extend from Rare to Neglected Diseases the internet together

  • If we can do this for small diseases….

  • Why not do it for bigger diseases?

  • Why not expand to common diseases?

  • Could Pharma use as their open innovation platform?


A mashup of
A the internet togethermashup of..

  • Crowdfunding

  • Crowdsourcing

  • Open Innovation

  • Open Source

  • Open Science

  • Precompetitive Initiative

  • Open Collaboration


Evolution of systems support for open source drug discovery
Evolution of Systems Support for the internet togetherOpen Source Drug Discovery

  • Extending ODDT – can we improve the model?

It could be:

An app

A website

A company

A technology

Consultancy


Components needed to support open source drug discovery
Components Needed to Support the internet togetherOpen Source Drug Discovery

Crowdsource Research

Get Research Done by Crowd

Externalize to Companies

Fund Research

Externalize Research to Companies

Fund Research

Find Collaborators

Share Research Openly

Precompetitive Collaboration

Find Collaborators Openly

Share Research Openly

Precompetitive Collaboration


Components needed to support open source drug discovery1
Components Needed to Support the internet togetherOpen Source Drug Discovery

Fund Research

Crowdsource Research

Fund Research

Externalize to Companies

Fund Research

Share Research Openly

Precompetitive Collaboration

Find Collaborators


Fund research functions
Fund Research functions the internet together

  • Scientists post project ideas they want funded

  • Parents / crowd / foundations fund research

  • Parents post ideas for projects they want to see done

  • Scientists and parents / foundations engage in dialog

  • Go beyond the current crowdfunding sites – all money goes to science


Components of champion
Components of Champion the internet together

Fund Research

Crowdsource Research

Get Research Done by Crowd

Get Research Done by Crowd

Externalize to Companies

Share Research Openly

Precompetitive Collaboration

Find Collaborators


Crowdsource research functions
Crowdsource the internet together Research Functions

  • Scientists and parents propose work they cannot do

  • Basically a help wanted advert

  • What expertise can people offer whether paid or free

  • Innocentive but more open on challenges


Components needed to support open source drug discovery2
Components Needed to Support the internet togetherOpen Source Drug Discovery

Fund Research

Crowdsource research

Externalize to Companies

Externalize Research to Companies

Externalize Research to Companies

Share Research Openly

Precompetitive Collaboration

Find Collaborators


Externalize to companies functions
Externalize to Companies Functions the internet together

  • So you want something beyond what the academics can do

  • Contract Research Organization connection

  • Can you connect to companies to get their compounds to screen?


Components needed to support open source drug discovery3
Components Needed to Support the internet togetherOpen Source Drug Discovery

Fund Research

Crowdsource Research

Externalize to Companies

Share Research Openly

Share Research Openly

Precompetitive Collaboration

Find Collaborators

Share Research Openly


Share research openly functions
Share Research Openly Functions the internet together

  • Blends ODDT with a database element

  • Search by compounds, by text

  • Store molecules

  • Bring in open data from external sources

  • Could imagine a closed component or some halfway point


Components needed to support open source drug discovery4
Components Needed to Support the internet togetherOpen Source Drug Discovery

Fund Research

Get Research Done by Crowd

Externalize Research to Companies

Share Research Openly

Precompetitive Collaboration

Precompetitive Collaboration

Find Collaborators Openly

Precompetitive Collaboration


Precompetitive collaborations functions
Precompetitive Collaborations Functions the internet together

  • Why do we need an actual organization to do these things?

  • Provide a point for discussion on the topic

  • Get people to propose projects

  • Project teams self organize

  • Provide a means for delivering content/projects to be shared

  • An index of collaborations


Components needed to support open source drug discovery5
Components Needed to Support the internet togetherOpen Source Drug Discovery

Fund Research

Crowdsource Research

Externalize to Companies

Find Collaborators

Share Research Openly

Precompetitive Collaboration

Find Collaborators Openly

Find Collaborators Openly


Find collaborators functions
Find Collaborators Functions the internet together

  • Can we involve preexisting similar tools?

  • Enable people to search by topic, disease,

  • Search grants, etc.

  • Find scientists that can do the research

  • Connect to them


Benefits of integration
Benefits of Integration the internet together

  • “One stop shop” for all needs

  • Crossover between topics and services

  • Create a pipeline for Open R&D within an app

  • Some users may have use for multiple features

  • Cheaper to develop than 6 separate apps


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