Partnering for Cures Innovator Presentations

I just spent a couple of days in New York at the Partnering for Cures meeting after being selected to give an innovator presentation (slides are here)on the work with CDD. This was my first time at this annual meeting and I can honestly say the best thing about it was the networking. All the talks are online for perusal – great idea. I met patient advocates like Jill Wood, Founder and President of Jonah’s Just Begun. Her son was diagnosed with Sanfilippo Syndrome, Type C, an incredibly rare disease. She is doing everything from fundraising to getting researchers to find a cure – essentially like a virtual biotech and she needs financial support as it is a race against time.

I personally did not learn anything new from many of the panel discussions..It did not help that many of them did not invite audience participation (maybe next year). Watching talking heads have a discussion with themselves is not my ideal way to spend time. A highlight for me was seeing John Wilbanks talk about a standardized informed consent protocol. This is something I think will have a big impact to open up healthcare data for analysis. Kudos to all involved Sage Bionetworks and the Ewing Marion Kauffman Foundation. This talk deserves a much bigger audience.

I would have liked to have heard discussion on truly disruptive approaches to change how we do drug discovery and development. There are thousands of diseases like Sanfilippo that have no cure. There was no discussion of Biohacking or other fringe activities despite a panel discussion on convergence..

On the one hand we have people that want to give the NIH more money – which is not enough to discover drugs. On the other we have the FDA that are barely in the electronic age even with fees coming from pharma. Then we have the pharmas that have tons of legacy data that is impossible to mine behind their own firewalls because they have to dig it out of dusty lab books. Going forward they can barely cope with the data from a few collaborations they have with CRO’s, Academics etc..and its only going to get more complex.

On behalf of all those patient groups we have to do something to change what is going on and enable faster cures. Collaboration was a HOT word at this meeting but I do not think its the solution, it is the new reality. I hope the partnering for cures can take a step away from the cozy panels of the same old players and bring in some new blood (with new approaches) at least to spur some alternative scenarios. There was a lot of talk of moonshots and Apollo missions..like the task ahead is just engineering, if only it was that simple.


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