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Yes, a prototype registry is under construction at Parkinsonsregistry.org. Initially, at least, access will be through the several major patient advocacy organizations and links through their web sites. Last questions are being worked on now, and it should be up and running shortly, though human subjects/ consent regulations here are a major consideration that needs to be addressed. We're happy there is an interest. Yes, it should help make a major contribution to research directions. Curt Pospisil ----- Original Message ----- From: "Linda J Herman" <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, March 29, 2000 7:12 AM Subject: PD News: PD Registry created in UK > The following was found on the AWAKENINGS web site : > http://www.parkinsonsdisease.com > LOok under News for the complete account. > Is there anyone on the list involved with this registry or know more > about it? It seems it could serve as a prototype for a similar database > in other countries as well. A registry was provided for in the Udall Act, > but are plans underway yet for such a registry in the U.S.? Wouldn't it > be great if the outcomes of the growing number of treatments for PD > could be predicted with more certainty than "it's a matter of trial and > error" ? > Linda Herman > > FROM: AWAKENINGS > "Providing better treatment for patients with Parkinson's disease: > The creation of a Parkinson's Disease Register" > (Excerpts) > ". . .In order to overcome some of the barriers that delay adoption of > new > treatments into medical practice, the European Parkinson's Disease > Association (EPDA) has developed a novel partnership that will enable > patient data to be collected to form a database, which we believe may > provide answers to some of the questions stated above. In time, this will > enable doctors, patients and medical policymakers to make better > decisions when choosing the best treatment regimes in PD. > > . . .This article describes some of the factors leading up to the > formation of the new Parkinson's Disease Registry, how it works in > practice and what benefits we can expect from the programme in the > future. > > . . .The establishment of large patient registries for specific diseases > is becoming increasingly common across a range of medical and surgical > specialities. These registries consist of an electronic database system > enabling the collection, exchange and analysis of data, which can be used > for research and other purposes. > > . . .Having recognised the need for developing a Parkinson's Disease > Registry, the EPDA has started the process by setting up a UK pilot > programme, which can later be rolled out across Europe. The pilot is a > collaborative initiative between the EPDA, five leading UK neuroscience > centres, Dendrite Clinical Systems (a specialised medical information > technology company) and SmithKline Beecham Pharmaceuticals. SmithKline > Beecham has provided sponsorship and has helped set up the programme but > has ***also agreed that the data generated will be held in trust by the > participating neurologists and the EPDA, rather than provide any > exclusive commercial benefit. (WAY TO GO SKB!) --my comment) > > . . .The key objective behind setting up the Parkinson's Disease > Registry is to collect prospective medical and patient-centred data on > sufferers of PD who attend the five neuroscience centres and track a > variety of outcomes over time. By pooling this data, computer analysis > can then be carried out to identify correlation between risk factors and > treatment regimes with outcomes. In this way, decision analysis tools can > be developed to help guide doctors provide optimal treatment for specific > patient groups with the goal of improving outcomes and quality of life. > > . . .How will the creation of a Parkinson's Disease Registry actually > benefit patients and their families? In the short term, we expect the > data to provide us with a better understanding of how PD affects specific > patient groups and how these groups respond to particular drugs. From > this, we can go on to develop 'risk models' that can guide doctors' > decision making and patients' choices to improve quality of care, based > on a far higher degree of precision than in the past > > By using these risk models and comparing outcomes between different > hospitals, we hope to be able to standardise a 'best practice' approach > for treatment in PD that will be adopted as widely as possible. > > . . . We also hope to include outcome tracking of PD patients who have > undergone surgical interventions to similarly evaluate outcomes in this > group. Ultimately, we hope to provide decision support tools to all > doctors who treat patients with PD, including GPs, to ensure that none of > the benefits that emanate from the programme are lost." > > Written by: Dr Tony Felton MBBS(Hons) DRCOG MRCGP MBA. General > Practitioner and Co-ordinator of the Parkinson's Disease Registry > Programme > Source: Dr Tony Felton. EPDA Magazine 1999; Issue 14.