Overview of Parkinsonism including Parkinson's Disease

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.

Parkinsonism Sample Catalog Ordering Submission Information
  • Required Clinical Data Elements for subjects with Parkinsonism (CDEs)  PDF File   Word File
  • Clinical Data Elements (CDEs) for Parkinsonism Data Dictionary  Excel File
  • Required Clinical Data Elements for subjects with Multiple System Atrophy (CDEs)  PDF File   Word File
  • Required Clinical Data Elements for subjects with Progressive Supranuclear Palsy (CDEs)  PDF File   Word File
  • Clinical Data Elements (CDEs) for Controls   PDF file    Word file
  • Clinical Data Elements (CDEs) for Controls Data Dictionary   Excel file
Questions?You may contact the NINDS Repository team at NINDS@Coriell.org.

PD Society Brain Bank articles regarding the diagnosis of Parkinson's

  • 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 offical 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.
  • WEMOVE The Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the Web.

References and Selected reading:

  1. Hughes AJ, Daniel SE, Kilford L, Lees AJ. Accuracy of clinical diagnosis of idiopathic Parkinson's disease. A clinico-pathological study of 100 cases. Journal of Neurology Neurosurgery and Psychiatry, 1992;55:181-184. PMID: 1564476
  2. Litvan I, Agid Y, Goetz C, et al. Accuracy of the clinical diagnosis of corticobasal degeneration: a clinicopathologic study. Neurology. 1997 Jan;48(1):119-25. PMID: 9008506
  3. Litvan I, Hauw JJ, Bartko JJ, et al. Validity and reliability of the preliminary NINDS neuropathologic criteria for progressive supranuclear palsy and related disorders. J Neuropathol Exp Neurol. 1996 Jan;55(1):97-105. PMID: 8558176
  4. McKeith I, Mintzer J, Aarsland D, et al. International Psychogeriatric Association Expert Meeting on DLB.Dementia with Lewy bodies. Lancet Neurol. 2004 Jan;3(1):19-28. PMID: 14693108
  5. Nussbaum RL, Polymeropoulos MH. Genetics of Parkinson's disease. Hum Mol Genet. 1997;6(10):1687-91. PMID: 9300660
  6. Stern MB, Koller WC eds. Parkinsonian Syndromes. Marcel Dekker, New York, 1993.
  7. Wenning GK, Colosimo C, Geser F, Poewe W. Multiple system atrophy. Lancet Neurol. 2004 Feb;3(2):93-103. PMID: 14747001
  8. Wszolek ZK, Tsuboi Y, Farrer M et al. Hereditary tauopathies and parkinsonism. Adv Neurol. 2003;91:153-63. PMID: 12442674