Small RNA-Seq of MicroRNA's in extracellular vesicles of Ushers Syndrome patients

General principles This research project is led by Irene Vazquez from Radboud University Medical Centre in Nijmegen, the Netherlands (“Radboudumc”). The Research Group is willing to consider applications from third party researchers for access to the RNA sequence data. Access to the data will be granted to qualified researchers for approved use and will be governed by the provisions laid out in the Data Access Procedure set forth below and the terms of the Data Access Agreement attached hereto. A qualified researcher refers to a senior investigator who is employed or legitimately affiliated with an academic, non-profit or government institution and who has a track record in the field. Access to RNA Sequencing Data is available by application to the Data Access Committee (DAC). Researchers granted access to RNA Sequencing Data must feedback the results of their research to the Research Group, after publication in accordance with the Research Group publication policy set forth in the Data Access Agreement. Access is conditional upon availability of data and on signed agreement by the researcher(s) and the responsible employing institution to abide by the policies and conditions related to publication, data ownership, data return, intellectual property rights, data disposal, ethical approval, confidentiality and commercialization referred herein. Data Available The following RNA Sequencing Data are available: The study involved genetically confirmed USH1B patients and their healthy relatives, with additional fibroblast samples from Spanish collaborators, to ensure a robust comparison of small non-coding RNAs (sncRNAs). Tear and blood samples were collected using non-invasive methods, and extracellular vesicles (EVs) were isolated from both tears and hiPSC-derived retinal pigment epithelium (RPE) cells. RNA was extracted from these EVs and assessed for quality before preparing libraries using the TruSeq Small RNA Library Preparation Kit. Sequencing was performed on the Illumina NextSeq 2000 platform, generating data for comparative analysis of sncRNA profiles between patients and controls. Data Access Committee Applications for access to RNA Sequencing Data must be made to the Data Access Committee (DAC). The DAC consists of Irene Vazquez and Sander Bervoets. Data Access Procedure 1. Application for Access The handling of applications, the issue of RNA Sequencing Data and any associated operations, administration and audits will be performed by the Radboudumc on behalf of the Research Group. Applications for access to RNA Sequencing Data must be submitted using the online EGA data request procedure and using the form in Appendix 1. The information disclosed in the application will be treated as confidential and will only be disclosed to the persons evaluating the application. All incoming applications will be documented, including any conjunct agreements with the applicants. Unless explicitly consented for by the applicant, this information will not be used for purposes other than evaluation of the application. 2. Multiple Applications Applicants agree to use the RNA Sequencing Data for the approved purpose and project described in the application; use of the data for a new purpose or project will require a new application and approval. The DAC will consider applications that include named collaborators, but each Institution must sign a separate Data Access Agreement. In the event an applicant wishes to share the data with additional collaborators not previously approved, these additional collaborators must make a separate application for access to the RNA Sequencing Data. In the event that two or more applications overlap, the DAC may propose the respective applicants to align their applications. 3. Assessment Criteria Applications which seek to reserve RNA Sequencing Data for unspecified research goals will not be taken into consideration. Applications for access to RNA Sequencing Data must be Specific, Measurable, Attainable, Resourced and Timely (SMART). Specifically, the DAC will assess each application to determine whether: i. it has been submitted by a qualified researcher or researchers, who is employed by or legitimately affiliated with a recognized research institution that can provide institutional responsibility for appropriate research governance; ii. the nature of the funding of the application and the applicant; iii. the research proposal has been peer-reviewed, and, if not, whether the proposal satisfies applicable scientific standards; iv. the requested data are, quantitatively and qualitatively, suitable and not excessive for the applicant’s proposed research; v. there are any similar applications pending or granted; 4. Access Decision The DAC will decide on an application within a reasonable period of time after it has received all pertinent information. If the DAC grants an application, additional agreements may be made regarding authorships along the lines set forth in the Publication Policy attached to the Data Access Agreement. Rejections of applications will be motivated. Mode of Access to Data, Restrictions and Authentication The RNA Sequencing Data will be made available through the European Genome Phenome Archive (EGA), hosted at the European Bioinformatics Institute. The issue of Project Data and the Data Access Agreement will be administered by Radboudumc. Data Access Conditions Access to RNA Sequencing Data is conditional on prior receipt by the Data Access Agreement attached as Appendix 2 hereto, signed and dated by the applicant(s) and the responsible employing Institution(s).