National Institute of Neurological Disorders and Stroke (NINDS) Repository Neurologically Normal Control Collection

The NINDS repository (http://ccr.coriell.org/ninds/) was established in October 2001 with the goal of developing standardized, broadly useful diagnostic and other clinical data, as well as a collection of DNA and cell line samples to further advance gene discovery of neurological disorders. All samples and both phenotypic and genotypic data are available to the research community including academic and industry scientists. A set of samples from individuals who do not have neurological disease was felt to be essential to allow gene discovery in neurological disorders to proceed. Towards this goal, the NINDS has and is collecting samples and phenotypic data on neurologically normal individuals. The data being collected includes demographic, ethnic, and exclusion of neurological disease information. Variables were measured using the Control Clinical Data Elements form. As of June 2007, there are a total of 2157 publicly available and an additional >2000 which will be added to the publicly available biomaterials collection shortly.

Blood samples were drawn from neurologically normal, unrelated, individuals at many different sites. Spouses, convenience controls, and population controls were all included in this collection. Each participant underwent a detailed medical history interview and had no family history on specific query of Alzheimer's disease, amyotrophic lateral sclerosis, ataxia, autism, bipolar disorder, brain aneurysm, dementia, dystonia, or Parkinson's disease. Folstein Mini-mental state examination scores ranged from 26-30 and are available on a subset of individuals. All participants were interviewed for family history in detail and specifically had no first degree relative with any of the following: amyotrophic lateral sclerosis, ataxia, autism, brain aneurysm, dystonia, Parkinson's disease, and schizophrenia.

A subset of neurologically normal control subjects was utilized in NINDS Parkinson's Disease, NINDS Amyotrophic Lateral Sclerosis and Controls and NINDS Ischemic Stroke Genetics Study (ISGS).

• Study Weblinks:
  • NINDS, National Institute of Neurological Disorders and Stroke
• Study Design:
  • Case-Control
• Study Type:
  • Control Set
• Total number of consented subjects: 2723
• Subject Sample Telemetry Report (SSTR)

Exclusion criteria:

1. The repository has added Mini mental status (MMSE) score to the controls CDE.
2. The NINDS Human Genetics Resource Center does not accept unaffected blood relatives of an affected individual unless:
   
   • They are approved as part of a special collection, per the project officer (such as a funded discordant sib pair study, a funded triad study, etc, that has already been approved).
   • They are part of a pedigree with three or more living affected individuals which have been or will be collected (notify the project officer in advance for such circumstances so that we do not reject them in error).
   
   
3. We will not accept as controls any individuals who themselves, or whose first degree relatives, have stroke, epilepsy, Parkinsons, or dementia, as this will prohibit our pooling of controls with other NIH collections. In some cases, those with related disorders to one of our collections may also be excluded (for example, a person with a transient ischemic attack (TIA) or carotid stenosis would not be considered a good control for Parkinson's, since, stroke is one of our target collections; likewise, a subject with a parent or sibling with Alzheimer's disease (AD) would not be a good control, since we are collecting Parkinsons and ALS which may have a biological relationship to AD).
4. If you are using subjects with a neurological disorder such as stroke, epilepsy, Parkinson's, as controls for your particular study, please do not fill out the control CDEs for that submission, but fill out the correct disease CDE for that disorder. That will allow us to accept them in most circumstances.
5. Controls without CDEs completed will not be accepted.

• Primary Phenotype: Normalcy

• Investigators who have submitted Neurologically Normal Control Samples and Data to the NINDS Repository to Date (July 2007). (Note that additional submitters are added regularly and this list may not be up to date on the newer contributors.)
  • Robert Brown, Jr. Massachusetts General Hospital, Boston, MA, USA.
  • Russell Buono. Veterans Affairs Medical Center, Coatesville, VA, USA.
  • Merit Cudkowicz. Massachusetts General Hospital, Boston, MA, USA.
  • Dennis Dickson. Mayo Clinic, College of Medicine, Jacksonville, FL, USA.
  • Matthew Farrer. Mayo Clinic, College of Medicine, Jacksonville, FL, USA.
  • Emily Gorbold (POSTCEPT study). University of Rochester, Rochester, NY, National Institute of Aging, National Institutes of Health, Bethesda, USA.
  • Ira Shoulson (POSTCEPT study). University of Rochester, Rochester, NY, National Institute of Aging, National Institutes of Health, Bethesda, USA.
  • Paul Gordon. Columbia University Medical Center, New York, NY, USA.
  • Katrina Gwinn-Hardy. National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD, USA.
  • John A. Hardy. National Institute of Aging, National Institutes of Health, Bethesda, MD, USA.
  • Ed Kasarskis. University of Kentucky Medical Center, Lexington, KT, USA.
  • Petra Kaufmann. Columbia University Medical Center, New York, NY, USA.
  • Laura Marsh. Johns Hopkins Hospital, Baltimore, MD, USA.
  • James Meschia. Mayo Clinic, College of Medicine, Jacksonville, FL, USA.
  • Robert Miller. California Pacific Medical Center, San Francisco, CA, USA.
  • Michael Okun. McKnight Brain Institute, Gainesville, FL, USA.
  • David Simon. Beth Israel Deaconess Medical Center, Boston, MA, USA.
  • Alma Sorenson. Massachusetts General Hospital, Boston, MA, USA.
  • Karen Furie. Massachusetts General Hospital, Boston, MA, USA.
  • Eric Sorenson. Mayo Clinic, College of Medicine, Rochester, MN, USA.
  • Rup Tandan. University of Vermont, College of Medicine, Burlington, VT, USA.
  • Ted Rothstein. The George Washington University, Washington, DC, USA.
  • Zbigniew Wszolek. Mayo Clinic, College of Medicine, Jacksonville, FL, USA.
  • William Young. University of California, San Francisco, CA, USA.