Coriell NINDS Repository Policy

Notification of changes to the Coriell - NINDS Repository Policy for Parkinson’s Disease and Amyotrophic Lateral Sclerosis DNA collections:

The Coriell Institute - NINDS Human Genetics Repository was founded in 2002 with the goal of accelerating genetic discoveries in complex neurologic disorders.  The Repository currently banks over 25,000 samples and associated clinical/phenotypic data from subjects with cerebrovascular disease, epilepsy, motor neuron disease, Parkinsonism and Tourette Syndrome, as well as controls.  In evaluating mature DNA collections represented by Parkinson’s Disease (3,912 cases), Amyotrophic Lateral Sclerosis (2,205 cases), and cerebrovascular disease (5,376 cases), the scientific advisory board for the repository recommended additional DNA submissions for these diseases be restricted to the following criteria:

1. Expansion of ancestral diversity within DNA collections.
2. Informative family-based or pedigree collections (especially families with more than one affected individual).  Sample collection would focus on affected and non-affected first and second degree relatives.
3. DNA collections with well-characterized clinical assessment and/or rich phenotypic data.  Clinical data could include longitudinal assessments, pharmacological/treatment response, environmental exposure, endophenotype or intermediate phenotype evaluations.
4. All DNA samples submitted must have a minimal embargo period.

Point of Contact:    NINDS@coriell.org