JMML targeted sequencing of candidate genes

JMML french cohort sequencing data

Human genetic data access agreementBetween:(1) Inserm U_1131 unit, a research unit based in France, IUH, Hôpital Saint-Louis, 75010 Paris, directed by Pr C. Chomienne. The team directed by Pr Helene Cave works on Juvenile Myelomonocytic Leukemia (JMML)(2) [INSERT INSTITUTION DETAILS] (the “Recipient”).In response to the Recipient's request for access to the Data (as defined below), U_1131 and the Recipient agree as follows:1 Definitions1.1“JMML project” shall mean all the projects undertaken at Inserm unit U_1131 to identify genetic sequence variants and mutations relevant to the development of this human cancer;1.2“Data” shall mean all and any human genetic data obtained from the CGP including the Data Subjects’ age, sex and tumour pathology. Explicitly, Data does not include samples or biological materials;1.3“Data Subject” shall mean the person (irrespective of state of health) to whom Data refers and who has been informed of the purpose for which the Data is held and has given his/her informed consent thereto;1.4“Registered User” shall mean a Researcher (or an individual conducting Research under the supervision of a Researcher) that is employed by the Recipient and is bound by confidentiality and non-use obligations in respect of Data and who has signed this Agreement and has received acknowledgement of its acceptance. For the avoidance of doubt, “Registered User” may also include students, visiting academics, contractors, sub-contractors or independent consultants provided that any such individual is bound by confidentiality and nonuse obligations no less onerous then those binding the Recipient’s employees;1.5“Research” shall mean research that is seeking to advance the understanding and treatment of JMML and closely related diseases, and work on statistical methods that may be applied to such research;2PurposeThe Recipient agrees to use Data only for the Research3ConfidentialityThe Recipient agrees to preserve, at all times, the confidentiality of Data pertaining to identifiable Data Subjects. In particular, the Recipient undertakes not to use, or attempt to use the Data to deliberately compromise or otherwise infringe the confidentiality of information on Data Subjects and their right to privacy.4Data Protection4.1The Recipient agrees that it, and its Registered Users, comply with the obligations contained in the 6 january 1978 french law relative to personal data protection, as amended from time to time, or equivalent national provisions no less onerous then those contained in the French Data Protection Law. In particular, the Recipient and its Registered Users understand their duties under such legislation in relation to the handling of Data and the rights of Data Subjects.4.2The Recipient agrees that it, and its Registered Users, shall not analyse or make any use of the Data in such a way that has the potential to: (a) lead to the identification of any Data Subject; or (b) compromise the anonymity of any Data Subject in any way.5Access and Governance5.1The Recipient agrees that it shall take all reasonable security precautions to keep the Data confidential, such precautions to be no less onerous than those applied in respect of the Recipient’s own confidential information5.2The Recipient agrees to only give access to Data, in whole or part, or any identifiable material derived from the Data, to a Registered User. The Recipient agrees that before it gives any Registered User access to Data, it shall first show the Registered User a copy of this Agreement and shall inform the Registered User that he or she must comply with the obligations contained in this Agreement and sign up to the provisions of this Agreement in the form set out at the end of this Agreement. 5.3The Recipient agrees that it shall only give Registered Users that are not Researchers (including but not limited to students or new researchers to the field) access to the Data if they are supervised by a Researcher who will take responsibility for such Registered Users’ use of the Data.6ErrorsThe Recipient agrees to notify the CGP of any errors detected in the Data.7PublicationsThe Recipient agrees to acknowledge in any work based in whole or part on the Data, the published paper from which the Data derives, the version of the Data, and the role of the CGP and its funders in its distribution. The Recipient agrees to use the acknowledgement wording provided for the relevant Data in its publication. The Recipient will also declare in any such work that those who carried out the original analysis and collection of the Data bear no responsibility for the further analysis or interpretation of it by the Recipient.8Termination of Agreement8.1This Agreement will terminate immediately upon any breach of the provisions of this Agreement by the Recipient or by the Recipient’s Registered Users.8.2The Recipient accepts that the changing ethical framework of human genetic research may lead to alteration to the provisions of this Agreement, in which case the Recipient may accept such alterations or terminate this Agreement.8.3Either party shall have the right to terminate this Agreement with immediate effect upon giving written notice of termination to the other party.8.4In the event that this Agreement is terminated in accordance with this Clause 8 the Recipient shall return or destroy all Data at the direction of Inserm U_1131 unit.9Legal statement9.1The Recipient acknowledges that Inserm U_1131 unit makes no warranty or representation, express or implied as to the accuracy, quality or comprehensiveness of the Data.9.2The Recipient understands that all the Data is protected by copyright and other intellectual property rights, such that duplication or sale of all of or part of the Data on any media is not permitted under any circumstances, except with the prior written consent of Inserm U_1131 unit.10Governing LawThis Agreement (and any dispute, controversy, proceedings or claim of whatever nature arising out of this Agreement or its formation) shall be construed, interpreted and governed by the laws of France and shall be subject to the exclusive jurisdiction of the French courts.AGREED by the parties through their authorised signatories Inserm U_1131Authorised signature :Name :Title :Date : RecipientRecipient Name :Address :Telephone number :Email :Authorised signature :Name :Title :Date : Registered User:The Registered User acknowledges the contents of this Agreement and agrees to comply with the obligations herein.Recipient Signature :Name :Title :Email :Date :Please send completed forms to:Pr Hélène CavéInserm unit U_1131IUHHôpital Saint-Louis75010 ParisFRANCE