Coded specimens are sent to researchers with the code varying from researcher to researcher to ensure that all studies are blinded. The code is released to the researcher only when the data have been collected and submitted to SMRI.

Conditions for Tissue Use

Researchers selected to receive tissue must sign an agreement that sets forth conditions for its use. These conditions require that the researcher:

• test all specimens sent to them
• not share the samples with other researchers
• notify SMRI
  a) if the samples are going to be moved to another institution
  b) before samples are used for research other than that originally proposed
• not release to other researchers or publish the specimen code, once received
• not publish any individual patient data
• return raw data to Dr. Maree Webster at websterm@stanleyresearch.org. The data should be in a Microsoft Excel spreadsheet, with measured variables in columns and case numbers in rows. All measured variables should be spelled out completely; the units of measurements should be included, and the assay methodology should be stated. Cells containing missing data, negative values, zeros, or extreme outliers (> 2 S.D. from the group mean) must be accompanied by a footnote explanation. Codes will be returned to investigators when all of these conditions are met.
• Do not use the tissue commercially unless specifically permitted under agreement with SMRI
• When submitting raw .cel files from microarray data and raw NGS data, CDs and portable hard drives must be mailed to:

Dr. Maree Webster
The Stanley Medical Research Institute
9800 Medical Center Drive, Suite C-050
Rockville, MD 20850

How Requests are Evaluated

The Tissue Allocation Committee evaluates brain tissue requests monthly. Committee decisions are based on the availability and quantity of tissue requested and how much tissue has already been allocated for this or closely related research. In cases in which SMRI has previously allocated brain collection tissue to individuals, their utilization of it will be a major consideration as to whether additional tissue requests will be granted.

Guidelines for Publishing Study Results

Researchers are asked to include the following phrase in any publication presenting study results that used SMRI brain collection tissue:

• Postmortem brain tissue was donated by The Stanley Medical Research Institute brain collection.

In addition, when publishing research in situations where measurements were made after the specimen code was broken on initial samples, researchers must state in the publication that the work was done “unblinded.”

Results received from researchers become part of the Stanley brain collection data set and will be used for integrative, multivariate analyses.

Results of integrative analyses are published under the aegis of the Stanley brain collection. Individual authorship will be given at the beginning of the article to any researcher whose data constitute 20 percent or more of the data being reported in that article. Individual authorship will also be given to persons involved in data analysis and administration of the brain collection. The Tissue Allocation Committee makes final decisions regarding authorship.

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