{"id":66,"date":"2015-08-27T16:30:07","date_gmt":"2015-08-27T16:30:07","guid":{"rendered":"http:\/\/deskiziarecords.com\/CIFASD\/?page_id=66"},"modified":"2024-08-21T18:53:31","modified_gmt":"2024-08-21T18:53:31","slug":"data-sharing","status":"publish","type":"page","link":"https:\/\/cifasd.org\/data-sharing\/","title":{"rendered":"DATA SHARING"},"content":{"rendered":"[vc_row][vc_column width=”1\/1″][vc_column_text disable_pattern=”true” align=”left” margin_bottom=”0″]\n

Available CIFASD Research Data<\/h2>\n

The CIFASD makes archived data available for discovery and validation research, with the ultimate goal of improving diagnoses, interventions, and treatment of FASD. Data from Phase 1-3 of CIFASD were collected using the same protocols; Data from Phase 4 vary in terms of population studied and outcome variables.<\/h5>\n

For more information on each Phase and the type of data that are available, please click on the appropriate cell within the Table below.<\/strong><\/p>\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n
Data Domain:<\/th>\nPhase 1<\/a><\/th>\nPhase 2<\/a><\/th>\nPhase 3<\/a><\/th>\nPhase 4<\/a><\/th>\n<\/tr>\n<\/thead>\n
Birth-related Data<\/a><\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n <\/td>\n<\/tr>\n
Dysmorphology<\/a><\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n<\/tr>\n
3D Facial Imaging<\/a><\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n<\/tr>\n
Neurobehavior<\/a><\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n<\/tr>\n
MRI<\/a><\/td>\n <\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n<\/tr>\n
Ukraine Prospective Data<\/span><\/td>\n <\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n<\/tr>\n
Genetics<\/a><\/td>\n <\/td>\n\u2714<\/td>\n\u2714<\/td>\n\u2714<\/td>\n<\/tr>\n
Cytokine<\/span><\/td>\n <\/td>\n <\/td>\n\u2714<\/td>\n\u2714<\/td>\n<\/tr>\n
Adult Health<\/span><\/td>\n <\/td>\n <\/td>\n <\/td>\n\u2714<\/td>\n<\/tr>\n
Early Predictors of FASD<\/a><\/td>\n <\/td>\n\u2714<\/td>\n\u2714<\/td>\n <\/td>\n<\/tr>\n
FASD-Tree Screening Tool<\/a><\/td>\n <\/td>\n <\/td>\n <\/td>\n\u2714<\/td>\n<\/tr>\n
Ultrasounds<\/span><\/td>\n <\/td>\n <\/td>\n <\/td>\n\u2714<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

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To request data, an application for data use must be submitted online via the CIFASD Data Access Request Form<\/a>. To preview the application form, please download this pdf<\/a>.<\/strong><\/p>\n

This application requires the investigator to provide information about the investigator and project, including:<\/p>\n

    \n
  1. General information about the requesting investigator<\/li>\n
  2. Investigator\u2019s Biosketch or CV<\/li>\n
  3. Description of the proposed research project and how the data will be used (See the Research Strategy Form<\/a>)<\/li>\n
  4. IRB approval to analyze de-identified data<\/li>\n<\/ol>\n

     <\/p>\n

    The CIFASD has a Data Access Committee that will review applications seeking access to archived data and ensure that data are appropriately disseminated. This includes assisting investigators in understanding the data which best matches their research objectives.<\/p>\n

     <\/p>\n

    Additional Resources<\/strong><\/p>\n