A modest proposal
Big Pharma has the funds and the Orgs have the connections. Why not build a series of research villages where Pharma supplied funds (tax breaks) are administered by Orgs to supply a simple living environment for PWP who agree to participate in tightly controlled trials (Academia)? These would be lifelong commitments that would protect patients while assuring followup data collection. Even those who were not in a given trial could serve as controls. PWP would have a place to go with good care. Pharma would get tax breaks and advance data access. Orgs would get a solid reason for their existence plus funding. Academics would be able to perform that "additional research" that seems to always be needed. It would have to be set up carefully, of course. But it would probably be cheaper than the current system (maybe by several orders of magnitude).
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.