Parkinsonism

The signs characteristic of Parkinson's disease (PD) are termed parkinsonism. Not all patients with parkinsonism have Parkinson's disease, though most do. Parkinsonian clinical signs disorders also include Progressive Supranuclear Palsy (PSP), Multiple system Atrophy (MSA), Corticobasal degeneration (CBD), Spinocerebellar Ataxia (SCA) Pallidopontal Degeneration, Frontotemporal Dementia with Parkinsonism (FTDP), and others. Clinical clues pointing towards disorders other than Parkinson's disease include gaze palsy (PSP), early autonomic failure (MSA), early falls (PSP or MSA), ataxia (MSA or spinocerebellar ataxia), and early dementia (Alzheimer's, which may exhibit parkinsonism, Frontotemporal dementia, or diffuse Lewy body disease).

The NINDS Cell and DNA repository includes subjects with Parkinson Disease, as well as other forms of parkinsonism. Also included in the collection are relatives of some proband subjects, spouses (spousal controls), and normal healthy individuals (including population and convenience controls).

In order to establish a well characterized collection of samples to facilitate gene discovery, Clinical Data Elements (CDEs) were developed which will allow a standard set of phenotypic information to accompany each sample. The parkinsonism CDEs were designed to reflect the widely utilized London Brain Bank Criteria (see Hughes et al 1992). Additional design was based on the results of a National Institute of Neurological Disorders and Stroke (NINDS) sponsored Clinical Criteria meeting. See the Parkinson's Disease Research Web and the Parkinson's Disease Research Agenda for more information.

Disease Sub-Collection at a Glance

Search the Collection

• Samples by diagnosis
• Samples by family
• Samples with mutations that cause Parkinsonism
• Parkinsonism subjects that tested wild-type for known genes
• Samples in DNA Panels
• Unaffected primary blood relatives of individuals with Parkinsonism 

Ordering

Acknowledgement Guidelines 

Submission Information

• Required Clinical Data Elements for subjects with Parkinsonism (CDEs) and Clinical Data Elements (CDEs) for Parkinsonism Data Dictionary
• Required Clinical Data Elements for subjects with Multiple System Atrophy (CDEs)
• Required Clinical Data Elements for subjects with Progressive Supranuclear Palsy (CDEs)
  
  

Links

• Federal Policy for the Protection of Human Subjects
• Michael J. Fox Foundation for Parkinson's Research is dedicated to ensuring the development of a cure for Parkinson's disease within this decade through an aggressively funded research agenda.
• Movement Disorders is an official journal of the Movement Disorder Society. The Society is dedicated to disseminating information on recent advances in both clinical and basic sciences related to movement disorders, and to the education of physicians and the public.
• Movement Disorder Society provides international forums to disseminate information on recent advances in both clinical and basic science pertinent to movement disorders, encourages research in both clinical and basic sciences related to movement disorders, enhances the education of physicians and the public about movement disorders, enhances the quality of care of patients with movement disorders, through its support of research and education.
• National Institute of Neurological Disorders and Stroke is the nation's leading supporter of biomedical research on disorders of the brain and nervous system.
• NINDS Parkinson's Disease Information Page
• Parkinson's Action Network (PAN) is the unified advocacy voice of the Parkinson's community, fighting for a cure within five years.
• Parkinson Alliance mission is to raise money for pilot study programs that allow researchers to qualify for major funding from the National Institutes of Health. The Alliance is also part of a public/private partnership with the National Institute for Neurological Disorders and Stroke (NINDS) that has committed $11 million over a two-year period to a fast-track grant program for Parkinson' research.
• Parkinson's Institute is an independent, not-for-profit organization conducting patient care and research activities in the neurological specialty area of movement disorders. Their mission is to find the cause and cure for these disorders, to provide the best available medical care to patients with movement disorders, to investigate better treatment and diagnostic tools, and to develop prevention strategies.
• Parkinson Study Group (PSG) is a non-profit, cooperative group of Parkinson's disease experts from medical centers in the United States and Canada who are dedicated to improving treatment for persons affected by Parkinson's disease.

PD Society Brain Bank articles regarding Parkinsonism:

• What features improve the accuracy of clinical diagnosis in Parkinson's disease: a clinicopathologic study. 1992.
• Accuracy of clinical diagnosis of idiopathic Parkinson's disease: a clinico-pathological study of 100 cases.

For questions please contact the NINDS Repository team at [email protected]