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There is a wide variety of resources on clinical research awareness and education available on the internet and elsewhere, as well as educational resources about Parkinson’s disease and current Parkinson’s research.  Below is a list of some key resources for people with PD.

General Clinical Research Information

Online Resources

The Center for Information and Study on Clinical Research Participation (CISCRP)
A non-profit organization focused on educating and informing the public about clinical research participation.

ClinicalTrials.gov
An NIH-run website cataloguing all clinical trials, national and international, for all conditions.

CenterWatch
A source of news, directories, analysis, and proprietary market research for clinical research professionals and patients.

FasterCures
The Center for Accelerating Medical Solutions with the mission to identify and implement global solutions to accelerate the process of discovery and clinical development of new therapies for the treatment of deadly and debilitating diseases.

National Institutes of Health (NIH)
An agency of the United States Department of Health and Human Services and the primary agency of the United States government responsible for biomedical and health-related research.

Medline Plus
Health information powered by the NIH, with a section devoted to clinical trials.

Applied Clinical Trials Online   
A resource on the business of clinical trials.

Book Resource

The Gift of Participation by Kenneth Getz.  Published in 2007 by Jerian Publishing.

Other Governmental Organizations Associated with Clinical Research

Department of Health and Human Services (HHS) 
A Cabinet department of the United States government with the goal of protecting the health of all Americans and providing essential human services.

Food and Drug Administration (FDA) 
An agency of the HHS responsible, for regulating and supervising the safety of drugs, vaccines, biological medical products, blood products, medical devices, and radiation-emitting devices, among other things like food and cosmetics.

National Institute of Neurological Disorders and Stroke  
A part of the NIH which conducts and funds research on brain and nervous system disorders.

Office of Human Research Protections (OHRP)
A small office within the HHS that deals with ethical oversight of clinical research conducted by the department, mostly through the NIH.

Office of Human Subjects Research (OHRS)
The OHSR was established to help NIH's Intramural Research Program (IRP) investigators understand and comply with the ethical guidelines and regulatory requirements for research involving human subjects.

Center for Drug Evaluation and Research (CDER)  
A division of the FDA that monitors most drugs as defined in the FD&C Act. The center reviews applications for new and generic pharmaceuticals, manages US regulations for pharmaceutical manufacturing, determines which medications require a prescription, monitors advertising of approved medications, and collects and analyzes safety data about pharmaceuticals that are already on the market.

Issues Related to Clinical Research

Understanding Informed Consent

Ethical Practices and the Office of Human Subject Research

Institutional Review Boards (IRBs)

Bioethics

Parkinson’s Disease and Related Research

Online Resources

PD Online Research
A collaborative community for technical discussion and problem-solving in Parkinson’s disease science.

Science Daily’s Parkinson’s Research Page
A comprehensive website which covers discoveries in all fields of the physical, biological, earth and applied sciences.

Phone Service

Parkinson’s Information Service - (800) 457-6676
Parkinson's Disease Foundation's toll-free helpline on PD, staffed by a team of information specialists.

Educational Forum

PDF’s Clinical Research Learning Institute
A three-day training that prepares people living with Parkinson’s to serve as advocates within the clinical research process.

Print Resource

100-page Comprehensive Resource List from the Parkinson’s Disease Foundation (PDF)

National Parkinson’s Organizations and Regional PDtrials Partners

Please visit our Steering Committee/Partners page.

Parkinsonisms and Related Disorders

Cure PSP, the Society for Progressive Supranuclear Palsy 
A rare degenerative disease involving the gradual deterioration and death of selected areas of the brain.

We Move Discussion Forum: Progressive Supranuclear Palsy

International Essential Tremor Foundation
A progressive neurological disorder whose most recognizable feature is a tremor of the arms that is apparent during voluntary movements such as eating and writing.

Lewy Body Dementia Association
A type of dementia closely allied to PD, and is characterized anatomically by the presence of Lewy bodies.

National Hydrocephalus Foundation
A condition that causes abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain.

Shy-Drager/Multiple System Atrophy Support Group
A degenerative neurological disorder associated with the degeneration of nerve cells in specific areas of the brain.

We Move Discussion Forum: Multiple System Atrophy

Tardive Dyskinesia Center 
A variety of dyskinesia manifesting as a side effect of long-term or high-dose use of medications such as metoclopramide, a drug sold under brand names such as Reglan in the United States.

Understanding Parkinson’s Plus Syndromes and Atypical Parkinsonism

We Move Discussion Forum: Corticobasal Degeneration
A rare progressive neurodegenerative disease involving the cerebral cortex and the basal ganglia, characterized by marked disorders in movement and cognitive dysfunction.