PIN Data or Specimen Use Request Process

1. A request for access to PIN data or specimens requires collaboration with one of the PIN Study's co-investigators (see Research Team). A preliminary discussion about the research topic and what data or specimens would be required must take place with an investigator before proceeding to the next steps.


2. An Data/Specimen Proposal Form must be submitted via email to Kathryn Carrier. Click here for instructions for completing the form (both files are in MS Word format).


3. Present the proposed work at one of the PIN Study's meetings. Email  Kathryn Carrier to be put on the schedule. The request will be evaluated by the investigators on the following basis:
   
   • scientific merit
   • sufficient power within the PIN data/specimens to address the aims
   • likelihood that the effort will be completed through publication
   • logistics and time required to assemble the analysis file, based on the estimated programmer prep time
   • amount of support required to complete the analysis/publication (e.g., programmer time)
   • whether specimens are available for the requested purpose
   
   
4. You will be notified if the research is approved by the study team. If it is approved you will be instructed to complete a Data Use Agreement Form, which provides guidance on use and security of the data, have the collaborating study investigator sign it, and mail it to Kathryn Carrier at CB #8120. (Data Use Agreement is in MS Word format.)


5. Develop an electronic list of variables, by their source file, so that an analysis file can be constructed.
   
   • See the PIN Study's documentation (PIN 1 and 2, PIN 3, or Postpartum) to identify the source and the variable names. (See example below.)
   • Include specifications about any restrictions on the data set to limit it to a desired population, e.g., only women who have folate values or only women who completed the Life Events Questionnaire.
   • Review the list with the co-investigator.
   • Submit the requested list to (Diane Kaczor), with a copy to (Nancy Dole) and the study investigator.
   • Be sure to include a date by which the analysis file is needed.

Below is an example of a source file and variable list, from the PIN 1 and 2 data, to request creation of an analysis data set (pay particular attention to notations in the documentation that indicate multiple observations per respondent -- they require special manipulation by the analyst to generate counts, the first observation, the last observation, etc. and will be given to the requestor as separate, unmerged, data sets):

 

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EXAMPLE OF AN ANALYSIS FILE REQUEST

RESTRICTIONS: Restrict merged data set to women who have completed the Life Events Questionnaire.

From the tracking data set:
patid startprg delivdat momage24

From the studywide variables data set:
patid c_case2 c_bmiiom c_mrace c_marita c_momedu c_povert c_parity c_liveb c_prestb c_preptb c_premis c_inches

From the BV assay results data set:
patid sbscore

From the Life Events Questionnaire data set:
patid lef1-lef5 leg4a leg4b leg4c

From the Main Questionnaire data set:
patid mqg12a mqg12b mqg13 mqb87 mqb88 mqh1 mqh2 mqh3 mqh4 mqh5