Parkinson Study Group founded

The research record

This is the project's file for this landmark, as written and checked. Sources are listed at the end; anything not yet confirmed is marked "Not yet verified".

Who

Ira Shoulson (University of Rochester, now Georgetown), who is credited with founding the group; his Georgetown profile also says he was principal investigator of the NIH-sponsored trials including DATATOP. Stanley Fahn is described as a co-founder in his own profile and in the Parkinson's Foundation timeline. The Rochester coordinating-centre role is not confirmed here.

What happened

The Parkinson Study Group (PSG) is a consortium of movement-disorder doctors who agree on one trial protocol and run it at many sites at once. The sources disagree on the start date: Shoulson's Georgetown profile and the Michael J. Fox Foundation profile say 1985; a profile of Fahn says 1986; the Parkinson's Foundation timeline says 1984 ("Drs. Stanley Fahn and Ira Shoulson set up the Parkinson Study Group"). This file uses 1985 as the middle value and the year is unresolved.

Its first big project was DATATOP (landmark 61). The DATATOP design paper reports 800 people with early, untreated Parkinson's enrolled at 28 US and Canadian sites; an indexed record dates enrolment to September 1987 to November 1988 and counts 34 PSG investigators. Later PSG-run or PSG-linked trials in this project include CALM-PD (landmark 163), ELLDOPA (landmark 161), the coenzyme Q10 trials (landmark 26) and SURE-PD3 (landmark 66).

Why it moved us toward a cure

No single clinic sees enough newly diagnosed, untreated patients to test whether a drug slows the disease. A standing network with trained raters, shared scales and a central coordinating office made trials of hundreds of people routine. It also fixed the shape of the "slowing" trial: early untreated patients, placebo control, and a clinical measure of progression. Its first result, DATATOP, showed both what such a trial could do and where the design was weak (symptom effects can mimic slowing).

Outcome

Advanced. The PSG is still active and is a partner in the PD GENEration study (landmark 278) and the PRISMS prevention trial (landmark 225). Whether its trials have produced a proven slowing drug: not yet.

Sources

• Ira Shoulson profile, Georgetown University Medical Center ("founded the Parkinson Study Group in 1985"; PI of NIH-sponsored trials including DATATOP)
• Ira Shoulson profile, Michael J. Fox Foundation
• Perspectives: life and work of Dr Stanley Fahn, Medlink (says 1986, co-founded with Shoulson; paywalled, read via search summary)
• Parkinson's Foundation research milestones (says 1984; page read)
• Parkinson Study Group, DATATOP design, Arch Neurol 1989;46:1052-1060, DOI 10.1001/archneur.1989.00520460028009, PMID 2508608 (abstract: 800 patients, 28 sites)
• DATATOP record: 800 subjects, 34 PSG investigators, Sept 1987 to Nov 1988
• Not yet verified: the true founding year (1984, 1985 or 1986; the group's own site was not reachable); the National Academies biography of Shoulson (no longer checked); that the coordinating centre is at Rochester; which trials in this project were formally PSG-run (only DATATOP's PSG authorship was checked); the group's current number of sites.