PROP1_study

Data Access Policy for the PROP1 study

2nd Faculty of Medicine, Charles University in Prague and University Hospital Motol, Prague, Czech RepublicData Access Policy for the PROP1 study1. Overview of the collectionThe collection consists of genotypes of 21 single nucleotide polymorphisms (SNPs)surrounding the PROP1 gene and 2 variants in the PROP1 gene causing combined pituitary hormone deficiency (CPHD) collected from patients with CPHD, their family relatives and healthy controls for use in the founder effect study of the 2 respective variants causing CPHD. Further information (including details of sample availability) can be obtained from Petra Dusatkova, Department of Pediatrics, 2nd Faculty of Medicine, Charles University in Prague and University Hospital Motol, Prague, Czech Republic (petra.dusatkova@lfmotol.cuni.cz).2. An outline of access process Access to the collection consists of four stages, which must be completed before data are provided:1. Determining the suitability of the collection and the eligibility of the proposed study/recipients for access2. Completing the application and providing any supporting information required3. Consideration by the Data Access Committee (DAC) of the application for approval4. Agreeing to the conditions of access. 3. Eligibility for accessThe data collection was generated for founder effect study of the most prevalent variants in the PROP1 gene causing CPHD and does not have consent for the use in a secondary research. Anonymised data can be made available for research approved by an appropriate Research Ethics Committees.Requestors should be employees of a recognised academic institution or of a commercial research organisation with experience in genetics and/or endocrinology. Requestors should be able to demonstrate, through their peer reviewed publications in the research area of genetics and/or endocrinology, their ability to carry out the proposed study.4. Application for accessOnce applicants have determined that they are eligible for access, either through reference to the collection‘s policies or by an informal approach to the DAC, the next stage is to formally apply for access. Researchers who wish to access the collection should initially contact the DAC via European Genome-phenome Archive (https://www.ebi.ac.uk/ega/home) giving a brief outline of the proposed study, the methodology to be followed and the number and type of data required. The DAC will assess the suitability of the application and respond to the applicant. Minimal information required: details of the requestor (name, institution / organisation, contact details, research CV), details of the study (study outline, proposed methodology, funding sources (and evidence of funding), evidence for ethical approvals, evidence of consent held, evidence of other approvals required, details of collaborators, plans for publication of results, lay summary of the study), reason for approaching this collection. Applications may be submitted at any time and will be considered in the order in which they are received.5. Method of accessThe EBI will create a personal account for the authorized person. The account username and password together with a RSA key provide access to the secure EGA infrastructure. A separate document with detailed guidelines on how to access and use these tools is provided to each account holder. The EGA help-desk provides training when needed.6. Conditions of accessThe account holder will abide by all current and future policies of the EBI for computer use as well as computer use policies of the European Molecular Biology Laboratory (EMBL), of which the EBI is a part. All EGA specific policies and standard operating procedures (SOPs) must also be followed. All applicable policies will be provided to the authorized users. Data supplied from the collection must only be used for the purposes stipulated by the DAC and described in the data transfer agreement.February 23rd 2015