Parkinson's Disease Registry of the Muhammad Ali Parkinson Center

Muhammad Ali Parkinson Research Center

Status

Unknown

Conditions

Parkinson's Disease

Study type

Observational

Funder types

Other

Identifiers

NCT00217321

03BN117

Details and patient eligibility

About

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

Full description

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.

Enrollment

20,000 estimated patients

Sex

All

Volunteers

No Healthy Volunteers

Inclusion criteria