Parkinson's Disease Registry of the Muhammad Ali Parkinson Center

Parkinson's Disease

Parkinson's disease, Parkinson disease, Registry, quality of life, database

The purpose of the Parkinson's disease Registry is to develop a national and international database of persons with Parkinson's disease (PD). The Registry will be used to facilitate the development of new therapies and healthcare services to improve the quality of life for people with PD. It will also be a means for investigators in the field of PD to quickly identify and notify subjects about other research studies for which they are eligible. Objectives include: * Assess current treatment approaches and develop best-practice guidelines * Track the functional abilities, access to healthcare and cost of illness of people with PD over time * Drive the development of innovative research projects * Accelerate the process of informing patients of research projects for which they may be eligible

What do you need to know? * Any individual diagnosed with PD is eligible to enroll. * Participation in the registry is voluntary, confidential and free of charge. * Eligible participants will be notified about opportunities to participate in clinical trials, though they are under no obligation to enter. * Participants will need to complete an updated questionnaire every six months. * Participants may also be asked to complete additional surveys for PD research projects. * Any data provided will be used in scientific publications in summary form only. * Participant names will not be released to anyone outside the Parkinson's disease Registry management team without written authorization, nor will names be sold for advertising or fund-raising purposes.

No related papers found yet.

None listed

United States