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RNA sequencing in blood samples of cluster headache patients

Cluster headache is a relatively rare headache disorder, typically characterized by multiple daily, short-lasting attacks of excruciating, unilateral (peri-)orbital or temporal pain associated with autonomic symptoms and restlessness. To better understand the pathophysiology of cluster headache, we used RNA sequencing to identify differentially expressed genes and pathways in whole blood of patients with episodic (n = 19) or chronic (n = 20) cluster headache in comparison with headache-free controls (n = 20).

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DATA ACCESS AGREEMENT These terms and conditions govern access to the managed access datasets (details of which are set out in Appendix I) to which the User Institution has requested access. The User Institution agrees to be bound by these terms and conditions.

Definitions Authorised Personnel: The individuals at the User Institution to whom Prof. Dr. Arn M.J.M. van den Maagdenberg grants access to the Data. This includes the User, the individuals listed in Appendix II and any other individuals for whom the User Institution subsequently requests access to the Data. Details of the initial Authorised Personnel are set out in Appendix II. Data: The managed access datasets to which the User Institution has requested access. Data Producers: Prof. Dr. Arn M.J.M. van den Maagdenberg and the collaborators listed in Appendix I responsible for the development, organisation, and oversight of these Data. External Collaborator: A collaborator of the User, working for an institution other than the User Institution. Project: The project for which the User Institution has requested access to these Data. A description of the Project is set out in Appendix II. Publications: Includes, without limitation, articles published in print journals, electronic journals, reviews, books, posters and other written and verbal presentations of research. Research Participant: An individual whose data form part of these Data. Research Purposes: Shall mean research that is seeking to advance the understanding of genetics and genomics, including the treatment of disorders, and work on statistical methods that may be applied to such research. User: The principal investigator for the Project. User Institution(s): The Institution that has requested access to the Data. Prof. Dr. Arn M.J.M. van den Maagdenberg: Department of Human Genetics Leiden University of Human Genetics Email: A.M.J.M.van_den_Maagdenberg@lumc.nl 1. The User Institution agrees to only use these Data for the purpose of the Project (described in Appendix II) and only for Research Purposes. The User Institution further agrees that it will only use these Data for Research Purposes which are within the limitations (if any) set out in Appendix I. 2. The User Institution agrees to preserve, at all times, the confidentiality of these Data. In particular, it undertakes not to use, or attempt to use these Data to compromise or otherwise infringe the confidentiality of information on Research Participants. Without prejudice to the generality of the foregoing, the User Institution agrees to use at least the measures set out in Appendix I to protect these Data. 3. The User Institution agrees to protect the confidentiality of Research Participants in any research papers or publications that they prepare by taking all reasonable care to limit the possibility of identification. 4. The User Institution agrees not to link or combine these Data to other information or archived data available in a way that could re-identify the Research Participants, even if access to that data has been formally granted to the User Institution or is freely available without restriction. 5. The User Institution agrees only to transfer or disclose these Data, in whole or part, or any material derived from these Data, to the Authorised Personnel. Should the User Institution wish to share these Data with an External Collaborator, the External Collaborator must complete a separate application for access to these Data. 6. The User Institution agrees that the Data Producers, and all other parties involved in the creation, funding or protection of these Data: a) make no warranty or representation, express or implied as to the accuracy, quality or comprehensiveness of these Data; b) exclude to the fullest extent permitted by law all liability for actions, claims, proceedings, demands, losses (including but not limited to loss of profit), costs, awards damages and payments made by the Recipient that may arise (whether directly or indirectly) in any way whatsoever from the Recipient’s use of these Data or from the unavailability of, or break in access to, these Data for whatever reason and; c) bear no responsibility for the further analysis or interpretation of these Data. 7. The User Institution agrees to follow the Fort Lauderdale Guidelines (http://www.wellcome.ac.uk/stellent/groups/corporatesite/@policy_communications/documents/web_document/wtd003207.pdf ) and the Toronto Statement (http://www.nature.com/nature/journal/v461/n7261/full/461168a.html). This includes but is not limited to recognising the contribution of the Data Producers and including a proper acknowledgement in all reports or publications resulting from the use of these Data. 8. The User Institution agrees to follow the Publication Policy in Appendix III. This includes respecting the moratorium period for the Data Producers to publish the first peer-reviewed report describing and analysing these Data. 9. The User Institution agrees not to make intellectual property claims on these Data and not to use intellectual property protection in ways that would prevent or block access to, or use of, any element of these Data, or conclusion drawn directly from these Data. 10. The User Institution can elect to perform further research that would add intellectual and resource capital to these data and decide to obtain intellectual property rights on these downstream discoveries. In this case, the User Institution agrees to implement licensing policies that will not obstruct further research and to follow the U.S. National Institutes of Health Best Practices for the Licensing of Genomic Inventions (2005) (https://www.icgc.org/files/daco/NIH_BestPracticesLicensingGenomicInventions_2005_en.pdf ) in conformity with the Organisation for Economic Co-operation and Development Guidelines for the Licensing of the Genetic Inventions (2006) (http://www.oecd.org/science/biotech/36198812.pdf ). 11. The User Institution agrees to destroy/discard the Data held, once it is no longer used for the Project, unless obliged to retain the data for archival purposes in conformity with audit or legal requirements. 12. The User Institution will notify Prof. Dr. Arn M.J.M. van den Maagdenberg within 30 days of any changes or departures of Authorised Personnel. 13. The User Institution will notify Prof. Dr. Arn M.J.M. van den Maagdenberg prior to any significant changes to the protocol for the Project. 14. The User Institution will notify Prof. Dr. Arn M.J.M. van den Maagdenberg as soon as it becomes aware of a breach of the terms or conditions of this agreement. 15. Prof. Dr. Arn M.J.M. van den Maagdenberg may terminate this agreement by written notice to the User Institution. If this agreement terminates for any reason, the User Institution will be required to destroy any Data held, including copies and backup copies. This clause does not prevent the User Institution from retaining these data for archival purpose in conformity with audit or legal requirements. 16. The User Institution accepts that it may be necessary for the Data Producers to alter the terms of this agreement from time to time. As an example, this may include specific provisions relating to the Data required by Data Producers other than Prof. Dr. Arn M.J.M. van den Maagdenberg. In the event that changes are required, the Data Producers or their appointed agent will contact the User Institution to inform it of the changes and the User Institution may elect to accept the changes or terminate the agreement. 17. If requested, the User Institution will allow data security and management documentation to be inspected to verify that it is complying with the terms of this agreement. 18. The User Institution agrees to distribute a copy of these terms to the Authorised Personnel. The User Institution will procure that the Authorised Personnel comply with the terms of this agreement. 19. This 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 the Netherlands and shall be subject to the exclusive jurisdiction of the Dutch courts. Agreed for User Institution Signature: Name: Title: Date: Principal Investigator I confirm that I have read and understood this Agreement. Signature: Name: Title: Date: Agreed for Prof. Dr. Arn M.J.M. van den Maagdenberg Signature: Name: Title: Date: APPENDIX I – DATASET DETAILS APPENDIX II ––PROJECT DETAILS APPENDIX III –– PUBLICATION POLICY APPENDIX I – DATASET DETAILS Dataset reference: EGAS00001001918 Whole blood samples of patients with episodic (n = 19) or chronic (n = 20) cluster headache or headache-free controls (n = 20) were collected. RNA was extracted and subjected to globin reduction. TruSeq RNA-Seq libraries were constructed with a circa 160 base pair (bp) insert size, followed by 90 bp paired-end RNA-sequencing on the Illumina Hiseq4000. Phenotype data on cluster headache diagnosis, medication use, age and gender is also available. Name of project that created the dataset RNA-seq in cluster headache Names of other data producers/collaborators E. Eising, N. Pelzer, L.S. Vijfhuizen, B. de Vries, M.D. Ferrari, P.A.C. ’t Hoen, G.M. Terwindt Specific limitations on areas of research / Minimum protection measures required File access: Data can be held in unencrypted files on an institutional compute system, with Unix user group read/write access for one or more appropriate groups but not Unix world read/write access behind a secure firewall. Laptops holding these data should have password protected logins and screenlocks (set to lock after 5 min of inactivity). If held on USB keys or other portable hard drives, the data must be encrypted. APPENDIX II – PROJECT DETAILS (to be completed by the Requestor) Details of dataset requested i.e., EGA Study and Dataset Accession Number Brief abstract of the Project in which the Data will be used (500 words max) All Individuals who the User Institution to be named as registered users Name of Registered User Email Job Title Supervisor* All Individuals that should have an account created at the EGA Name of Registered User Email Job Title APPENDIX III – PUBLICATION POLICY Prof. Dr. Arn M.J.M. van den Maagdenberg intends to publish the results of their analysis of this dataset and do not consider its deposition into public databases to be the equivalent of such publications. Prof. Dr. Arn M.J.M. van den Maagdenberg anticipates that the dataset could be useful to other qualified researchers for a variety of purposes. However, some areas of work are subject to a publication moratorium. The publication moratorium covers any publications (including oral communications) that describe the use of the dataset. For research papers, submission for publication should not occur until 12 months after these data were first made available on the relevant hosting database, unless Prof. Dr. Arn M.J.M. van den Maagdenberg has provided written consent to earlier submission. In any publications based on these data, please describe how the data can be accessed, including the name of the hosting database (e.g., The European Genome-phenome Archive at the European Bioinformatics Institute) and its accession numbers (EGAS00001001918), and acknowledge its use in a form agreed by the User Institution with Prof. Dr. Arn M.J.M. van den Maagdenberg.

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.

Study ID Study Title Study Type
EGAS00001001918 Other

This table displays only public information pertaining to the files in the dataset. If you wish to access this dataset, please submit a request. If you already have access to these data files, please consult the download documentation.

ID File Type Size Located in
EGAF00001271016 fq.gz 1.1 GB
EGAF00001271017 fq.gz 1.1 GB
EGAF00001271018 fq.gz 1.1 GB
EGAF00001271019 fq.gz 1.1 GB
EGAF00001271020 fq.gz 1.2 GB
EGAF00001271021 fq.gz 1.3 GB
EGAF00001271022 fq.gz 1.2 GB
EGAF00001271023 fq.gz 1.4 GB
EGAF00001271024 fq.gz 1.2 GB
EGAF00001271025 fq.gz 1.3 GB
EGAF00001271026 fq.gz 1.2 GB
EGAF00001271027 fq.gz 1.3 GB
EGAF00001271028 fq.gz 1.2 GB
EGAF00001271029 fq.gz 1.3 GB
EGAF00001271030 fq.gz 1.2 GB
EGAF00001271031 fq.gz 1.2 GB
EGAF00001271032 fq.gz 1.2 GB
EGAF00001271033 fq.gz 1.3 GB
EGAF00001271034 fq.gz 1.2 GB
EGAF00001271035 fq.gz 1.3 GB
EGAF00001271036 fq.gz 1.2 GB
EGAF00001271037 fq.gz 1.3 GB
EGAF00001271038 fq.gz 1.2 GB
EGAF00001271039 fq.gz 1.3 GB
EGAF00001271040 fq.gz 1.2 GB
EGAF00001271041 fq.gz 1.3 GB
EGAF00001271042 fq.gz 1.2 GB
EGAF00001271043 fq.gz 1.3 GB
EGAF00001271044 fq.gz 1.2 GB
EGAF00001271045 fq.gz 1.3 GB
EGAF00001271046 fq.gz 1.2 GB
EGAF00001271047 fq.gz 1.3 GB
EGAF00001271048 fq.gz 1.3 GB
EGAF00001271049 fq.gz 1.4 GB
EGAF00001271050 fq.gz 1.2 GB
EGAF00001271051 fq.gz 1.3 GB
EGAF00001271052 fq.gz 1.2 GB
EGAF00001271053 fq.gz 1.3 GB
EGAF00001271054 fq.gz 1.2 GB
EGAF00001271055 fq.gz 1.3 GB
EGAF00001271056 fq.gz 1.2 GB
EGAF00001271057 fq.gz 1.3 GB
EGAF00001271058 fq.gz 1.2 GB
EGAF00001271059 fq.gz 1.3 GB
EGAF00001271060 fq.gz 1.2 GB
EGAF00001271061 fq.gz 1.3 GB
EGAF00001271062 fq.gz 1.3 GB
EGAF00001271063 fq.gz 1.3 GB
EGAF00001271064 fq.gz 1.2 GB
EGAF00001271065 fq.gz 1.3 GB
EGAF00001271066 fq.gz 1.1 GB
EGAF00001271067 fq.gz 1.3 GB
EGAF00001271068 fq.gz 1.2 GB
EGAF00001271069 fq.gz 1.3 GB
EGAF00001271070 fq.gz 1.2 GB
EGAF00001271071 fq.gz 1.3 GB
EGAF00001271072 fq.gz 1.2 GB
EGAF00001271073 fq.gz 1.3 GB
EGAF00001271074 fq.gz 1.2 GB
EGAF00001271075 fq.gz 1.3 GB
EGAF00001271076 fq.gz 1.2 GB
EGAF00001271077 fq.gz 1.3 GB
EGAF00001271078 fq.gz 1.2 GB
EGAF00001271079 fq.gz 1.3 GB
EGAF00001271080 fq.gz 1.2 GB
EGAF00001271081 fq.gz 1.3 GB
EGAF00001271082 fq.gz 1.3 GB
EGAF00001271083 fq.gz 1.4 GB
EGAF00001271084 fq.gz 1.2 GB
EGAF00001271085 fq.gz 1.3 GB
EGAF00001271086 fq.gz 1.2 GB
EGAF00001271087 fq.gz 1.3 GB
EGAF00001271088 fq.gz 1.2 GB
EGAF00001271089 fq.gz 1.3 GB
EGAF00001271090 fq.gz 1.2 GB
EGAF00001271091 fq.gz 1.3 GB
EGAF00001271092 fq.gz 1.2 GB
EGAF00001271093 fq.gz 1.3 GB
EGAF00001271094 fq.gz 1.2 GB
EGAF00001271095 fq.gz 1.3 GB
EGAF00001271096 fq.gz 1.2 GB
EGAF00001271097 fq.gz 1.3 GB
EGAF00001271098 fq.gz 1.2 GB
EGAF00001271099 fq.gz 1.3 GB
EGAF00001271100 fq.gz 1.2 GB
EGAF00001271101 fq.gz 1.4 GB
EGAF00001271102 fq.gz 1.2 GB
EGAF00001271103 fq.gz 1.3 GB
EGAF00001271104 fq.gz 1.5 GB
EGAF00001271105 fq.gz 1.6 GB
EGAF00001271106 fq.gz 1.2 GB
EGAF00001271107 fq.gz 1.3 GB
EGAF00001271108 fq.gz 1.2 GB
EGAF00001271109 fq.gz 1.3 GB
EGAF00001271110 fq.gz 1.2 GB
EGAF00001271111 fq.gz 1.4 GB
EGAF00001271112 fq.gz 1.3 GB
EGAF00001271113 fq.gz 1.4 GB
EGAF00001271114 fq.gz 1.2 GB
EGAF00001271115 fq.gz 1.3 GB
EGAF00001271116 fq.gz 1.2 GB
EGAF00001271117 fq.gz 1.2 GB
EGAF00001271118 fq.gz 1.2 GB
EGAF00001271119 fq.gz 1.3 GB
EGAF00001271120 fq.gz 1.2 GB
EGAF00001271121 fq.gz 1.3 GB
EGAF00001271122 fq.gz 1.2 GB
EGAF00001271123 fq.gz 1.3 GB
EGAF00001271124 fq.gz 1.2 GB
EGAF00001271125 fq.gz 1.3 GB
EGAF00001271126 fq.gz 1.3 GB
EGAF00001271127 fq.gz 1.4 GB
EGAF00001271128 fq.gz 1.2 GB
EGAF00001271129 fq.gz 1.4 GB
EGAF00001271130 fq.gz 1.2 GB
EGAF00001271131 fq.gz 1.4 GB
EGAF00001271132 fq.gz 1.2 GB
EGAF00001271133 fq.gz 1.3 GB
EGAF00001271134 fq.gz 1.1 GB
EGAF00001271135 fq.gz 1.1 GB
120 Files (152.0 GB)