There seems to be some confusion about the registry projects going on at various organizations and I'd like to clear this up. Muhammad Ali Parkinson Center's registry is designed to allow people with Parkinson's (PWP) to share their story and track their disease. It is designed as a resource for the community. It is not, however, designed to be a scientific resource. The PD-DOC project is designed around a very specific dataset used in clinical trials. The data is expensive to collect, requires a lot of neurologist time for each PWP, and requires the funding associated with a clinical trial to be implemented. This means that PWP who are excluded from clinical trials -- including later stage patients, PWP with early dementia, PWP with comorbid conditions -- are excluded from the PD-DOC dataset. Further, PD-DOC is not a longitudinal database, meaning that it does not follow a set of PWP for a long time. It collects data only on PWP who participate in clinical trials and only for the duration of the clinical trials. PD-DOC is really being built to identify biomarkers for PD -- things that indicate the presence or progression of PD that can be found through a blood test, medical imaging, or some other lab test. When such a biomarker is found, the current PD-DOC dataset will largely be scrapped in favor of one based on the biomarker, as funding agencies will no longer be willing to pay for the expensive collection of neurologist evaluations and will opt instead to measure progression via the (presumably more accurate) biomarker.

The NPF registry (yes, I am involved in it) is designed to address many of these concerns. Data is collected from every PWP seen by a participating neurologist (or an unbiased subset of them) and this includes early stage, late stage, and cognitively-impaired people. By collecting data annually from every PWP, we are targeting the quality of care. The NPF's registry focuses on PWP-completed forms with neurologist insight and some tests completed by a researcher. The data is validated (and thus can be used in research) but is easy and inexpensive to collect, and was designed to give insight into care quality.

The NPF registry is being guided by Professor Gerry O'Connor of the Dartmouth Health Policy Center. He was the architect of the Northern New England Cardiovascular Group Registry and the Cystic Fibrosis quality registry. Both these projects changed the course of care in their diseases. Atul Gwande wrote a powerful piece in the New Yorker about the Cystic Fibrosis quality project, The Bell Curve (available on the New Yorker website). If we can bring a fraction of the improvement in care quality achieved by the cardiovascular group or CFF, we will have changed Parkinson's care for the better. Other registries are not designed to directly address care issues: PD-DOC is largely populated with drug studies. In contrast, NPF's registry tracks referrals to allied professionals, evaluates care-giver strain, and measures quality of life, among other data.

Each of these databases, can, in its own way, provide a benefit. MAPC's project is designed around helping PWP deal with their disease. PD-DOC's project is about creating lasting value from short-term clinical trials. NPF's registry is designed to help neurologists and their patients to define and practice exemplary care. No two of these goals could be achieved through the same registry as each balances, in a different way, cost, intensity, and sustainability.