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Request for Data and Forms
The GeneSTAR Research Program has an interest in collaborations proposed by investigators with good-standing in academic and research organizations.
GeneSTAR has a wealth of baseline and follow-up data, genotyping, and substudies, focused on cardiovascular disease, cerebrovascular disease, and attendant risk factors and processes.
The phenotype information on the Phenotypes Available link below will assist with a partial list of what is available. A bank of specimens is also also available under a materials transfer agreement with The Johns Hopkins University. Please contact us for information about how to obtain samples.
All requests are considered on their scientific merit and congruence with the consenting procedure.
Please read the Data Sharing Manual in its entirety before submitting a request for data or samples. Prior discussion with the study investigators is strongly encouraged to better assist in choices.
Click on the following for downloads:
Data Sharing Manual
Limited Access Agreement Forms
Please contact Lisa R Yanek (firstname.lastname@example.org), Director of our Analysis Unit who will put you in touch with the correct study investigators.
Most of our data and cell samples are also publicly available via NIH repositories.
dbGAP Information: http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000375.v1.p1
We maintain an iPSC banking repository for nearly 200 cell lines at Johns Hopkins in the Becker Laboratory in Cardiology.
The cells are also available at WiCell, Inc. the home of the entire NHLBI NextGEN Project. WiCell can be searched using the following link to the Becker cells from GeneSTAR: http://www.wicell.org/home/stem-cell-lines/catalog-of-stem-cell-lines/collections/nhlbi-next-gen-becker.cmsx
This collection contains 198 human induced pluripotent stem cell lines derived from PBMC of healthy brothers, sisters, and offspring of index cases and siblings of persons of early onset coronary disease, No subjects were affected with clinical coronary disease, stroke, or other overt vascular disease phenotypes at the time of the study. Our focus was on the differentiation to mk cells.
Cells may only be used for cardiovascular and cardiovascular related research and are not available for commercial use or for profit.
Based on participant consent forms, only aggregate data are available on dbGAP. Individual level data will be available using a Limited Access Agreement which requires submission of an application and a study description to the GeneSTAR Study Steering Committee at The Johns Hopkins University. All data and all information will be fully deidentified according to our consent process.
- Download preliminary application form.
- Complete and submit preliminary application (electronic or mail).
- Provide a précis of planned data use.
- Provide the Principal Investigator's curriculum vita.
- Allow time for review.
- Once preliminary approval is given, then formal Limited Access Agreement application must be completed.
Obtaining the Data
Provide a full list of data requested and follow the Data Sharing Manual instructions.
- A full review will ensue and approval will be given in a reasonable period of time.
- Data will be transferred using a File Transfer Protocol (FTP).
- Alternative measures for transfer will be considered.
- Annual renewal is necessary and demonstration of progress is required to maintain the individual level data.
- Once the investigation is completed, all individual level data will not be maintained in any non-Johns Hopkins site or shared with another investigator.
- The source of the data is to be noted in all publications, using language available in the Data Sharing Manual.
- Care must be taken to assure the most secure conditions for our research participants' data.
- All data analyses performed with the data must comply with the terms of the application only and will be the sole properties of the investigators performing the analyses.