PPIL4 is essential for brain angiogenesis and implicated in intracranial aneurysms in humans
Patients in IA cohort with PPIL4 mutations (Please see Supplementary Table 3 for clinical characteristics of the patients)
- 12 samples
- DAC: EGAC00001002301
- Technologies: Illumina HiSeq 2000, Illumina HiSeq 2500
This committee controls the access of the genomic data deposited to EGA
Non-Identifying Data Use and Confidentiality Agreement This Non-Identifying Data Use Agreement (the “Agreement”) is entered into by and between Yale University, a non-profit corporation organized and existing under and by virtue of a special charter granted by the General Assembly of the Colony and State of Connecticut, with offices located at 47 College Street, Suite 203, New Haven, CT 06520-8047 (“Provider”) and a researcher whose institution has previously completed this Non-Identifying Data Use and Confidentiality Agreement and has received acknowledgement of its acceptance, (“Data Recipient”), collectively, the “Parties”. 1. Definitions. The parties agree that the following terms, when used in this Agreement, shall have the following meanings, and that the terms set forth below shall be deemed to be modified to reflect any changes made hereafter to such terms by law or regulation. • "Confidential Information" shall mean any and all information, know-how and data, technical or nontechnical, which is not publicly known and which is disclosed to the Data Recipient by the Provider, subject to the terms of this Agreement. • “Data” means non-identifying data that may not be matched and/or linked to any individual person. 2. Obligations of Data Recipient. • Performance of Activities. Data Recipient may use and disclose the Data Set only in connection with the performance of the research activities described in Exhibit A attached to this Agreement. • Permitted Access to Data Set. Data Recipient shall limit the use or receipt of the Data Set to the approved individuals or classes of individuals who need the Data Set for the performance of the approved purpose and project described in the Data Recipient’s application. Use of the Data Set for a new purpose or project will require a new application and approval. • Assurances of Data Recipient’s Non-Employee Agents. Data Recipient shall not disclose the Data Set to any non-employee agent or subcontractor of Data Recipient except with the prior written consent of the Provider. Data Recipient shall ensure that any agents, including subcontractors, to whom it provides the Data Set agree in writing to be bound by the same restrictions and conditions that apply to Data Recipient with respect to such Data Set. • Nondisclosure Except As Provided In Agreement. Data Recipient shall not use or further disclose the Data Set except as permitted or required by this Agreement. • Safeguards. Data Recipient shall use appropriate safeguards to prevent use or disclosure of the Data Set other than as provided by this Agreement. 3. Confidential Information. • Purpose. The parties agree that Provider’s disclosures of Confidential Information to Data Recipient are for the sole purpose of Data Recipient’s research. • Exceptions. The Data Recipient shall not be liable for the disclosure or use of Provider’s Confidential Information that the Data Recipient can demonstrate by competent physical evidence: • was known to the Data Recipient prior to the disclosure by the Provider; or • is or becomes publicly known through no fault or omission attributable to the Data Recipient; or • is rightfully given to the Data Recipient by a third party under no obligation of confidentiality to the Provider; or • is independently developed by the Data Recipient without the aid, application or use of such Confidential Information; or • is required to be disclosed by law, governmental regulation or order of a court of competent jurisdiction; or • is disclosed pursuant to prior and specific written consent of the Provider. • Legal or Administrative Proceeding. In the event Data Recipient is required to disclose Provider’s Confidential Information pursuant to this agreement, Data Recipient agrees to give Provider reasonably advance written notice of its required disclosure. Provider, in its sole discretion and expense, may then seek a protective order or other remedy and/or waive compliance with the provisions of this Agreement. To the extent permitted by law, Data Recipient will assist and cooperate in good faith with Provider, at Provider’s expense. In the event that such protective order or other remedy is not obtained or sought by Provider, Data Recipient will: (i) disclose only that portion of the Confidential Information that is legally required to be disclosed in the opinion of Data Recipient’s legal counsel, (ii) take such steps as are reasonably necessary not to prejudice the parties’ right to protect such Confidential Information and (iii) request the requiring adjudicating body and/or agency to maintain the confidentiality of such Confidential Information. Employees; Third Parties. The Data Recipient will disclose the Provider’s Confidential Information only to those employees, agents, representatives, consultants and/or subcontractors who have a reasonable need-to-know as a part of the Data Recipient’s evaluation of such for the research development described in the Data Recipient’s application and shall exercise no less than reasonable care in holding such information in confidence pursuant to the terms of this Agreement and, in no event, with less care than it would protect its own Confidential Information. The Data Recipient shall require its respective employees, agents, representatives, consultants and subcontractors described herein to comply with the terms of this Agreement. Any publication must be provided to Provider sixty (60) days in advance for review to confirm that it meets the terms of this Agreement and the approved purpose and project described in the Data Recipient’s application. • Prohibited Use. The Data Recipient further agrees that it will not: (1) copy, reproduce or otherwise reduce to writing any part of the Provider’s Confidential Information except and only as may be reasonably necessary for the purpose described herein, and that all Confidential Information, including any materials or media that contain the Confidential Information and all copies thereof, shall remain the exclusive property of the Provider, and (2) make any commercial use of any of Provider’s Confidential Information, in whole or in part, without the Provider’s prior written and specific consent. Notwithstanding, nothing in this Agreement shall be construed to limit the Data Recipient from independently developing, selling or acquiring knowledge, information, services or products of any kind without the use of the Provider’s Confidential Information. • Warranty; No Obligation to Receive Confidential Information. Provider warrants that it has the right to disclose the Confidential Information actually disclosed under this Agreement. Nothing in this Agreement shall be construed to impose any obligation on the Data Recipient to receive any Confidential Information that it does not wish to receive, or to enter into any other agreement of any nature, nor shall this Agreement result in any claim whatsoever by one party against another for reimbursement of costs for any effort expended. This Agreement is for protecting Confidential Information only. • Notices. All notices concerning this Agreement shall be in writing and deemed sufficiently given if delivered in person with a receipt signed by the person accepting delivery; or sent by facsimile or electronic mail; or by registered or certified mail, postage prepaid; or by recognized overnight delivery service; each with confirmation of receipt, to the address of the applicable party as set forth in the preamble or as otherwise provided by the party receiving such notice(s) and marked for the attention of such party’s Principal Investigator as specified by the relevant signature line below. • No Public Disclosures. No party shall issue any public disclosures or statements regarding this Agreement or the subject matter thereof without the prior written consent of the other party. • Injunctive Relief. The Data Recipient acknowledges that the Provider may not have an adequate remedy at law in the event of any breach or threatened breach by Data Recipient of any provision of this Agreement and that the Provider would likely suffer irreparable damage and injury as a result. Accordingly, in the event of any such breach or threatened breach, Data Recipient hereby agrees that Provider shall be entitled to seek immediate injunctive relief without the posting by the Provider of any bond or other security therefore, and Data Recipient further agrees not to raise as a defense the availability of monetary damages as a remedy. 4. Material Breach, Enforcement and Termination. • Term. This Agreement shall remain in force for a period of one (1) year, unless earlier terminated upon thirty (30) days written notice by the terminating party, as evidenced by a confirmation of receipt. The obligations of the parties under this Agreement with respect to any Confidential Information shall survive the termination of this Agreement and remain in effect for three (3) years from the date of expiration or earlier termination of this Agreement. 5. Miscellaneous Terms. • Primacy. To the extent that any provisions of this Agreement conflict with the provisions of any other agreement or understanding between the parties, this Agreement shall control. • Data Recipient will accept that Data Set will be reissued from time to time, with suitable versioning. If the reissue is at the request of sample donors and/or other ethical scrutiny, Data Recipient will destroy earlier versions of the Data Set. • Data Recipient will accept that the Provider, the original data creators, depositors or copyright holders, or the funders of the Data or any part of the Data supplied: (1) bear no legal responsibility for the accuracy or comprehensiveness of the Data; and (2) accept no liability for indirect, consequential, or incidental, damages or losses arising from use of the Data, or from the unavailability of, or break in access to, the Data for whatever reason. • Data Recipient will acknowledge the Yale University Department of Neurosurgery in any publications that result from the dataset. • Dr. Erson-Omay or Dr. Tanyeri Barak will have an opportunity to review any publications that result from the dataset. • Data Set provided by Dr. Erson-Omay (original and copies) to be destroyed 2 years from the effective date of this agreement, unless a publication results, in which case the data is to be destroyed 2 years from the publication date. Documentation of destruction must be submitted within 10 days of the applicable milestone.
Studies are experimental investigations of a particular phenomenon, e.g., case-control studies on a particular trait or cancer research projects reporting matching cancer normal genomes from patients.
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