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Rules and Regulations

The rules to which the (main) participants of the consortium are bound, are outlined below. The document was drafted in Leuven, Belgium on April the 2nd, 1998 and revised in Frascati, Italy on September the 21st, 2001.

The genetic material collected by the consortium may be used by a third party. Regulations with regard to the use of this material, were put down in an agreement which you can find at the bottom of the page.

Disclaimer: The Euro-MRX consortium strives to provide accurate information but makes no guarantees about the integrity of the contents of this website. The consortium does not accept responsibility for the use of data from the database or of genetic material by a third party.

Rules of the Euro-MRX consortium

  1. Full members
    Presently full members are:
    Berlin: Ropers
    Leuven: Fryns
    Nijmegen: van Bokhoven/Hamel
    Paris: Chelly
    Tours: Moraine

    Associate members may contribute their family material to the Consortium through one of the full members.

  2. Exchange of samples and data
    Full members are obliged
    • to exchange samples (EBV cell line of one patient per family, linked and unlinked) on a continuous basis.
    • to exchange data on a continuous basis
    • to use the consortium material for mutation analysis
    • to keep data confidential when requested to do so

  3. Publications
    In case of publication co-authorship is provided to each full member in whose family a mutation was found. Also "the European XLMR consortium" as such will be a co-author, whereas the names of the remaining full members will be mentioned in the acknowledgements. When applicable the referring physician may be offered a co-authorship.

  4. Associate members
    In case a mutation is found in the family material provided by an associate member, co-authorship is offered to this associate member.

  5. Use of consortium material on request of a third party
    The third party has to request use of the consortium material by e-mail form to the participant in Nijmegen.
    • If they want to screen known genes (e.g. from the NCBI list or from OMIM), the names of those genes should be disclosed to the consortium.
    • If they have identified positional candidate genes (e.g. by breakpoint cloning, by compilation of ESTs, or by interspecies genome comparison) and want to screen them for mutations in consortium material, at least the relevant segment of the X and, for determining the amount of DNA required, the number of exons should be given.

    When all full members consent to this request, DNA of one patient per family is send to the third party after signing of an agreement in which it is specifically stated that:

    • the DNA will not be send to another party.
    • the DNA will only be used for the requested investigations.
    • the results of the investigations will be send to the consortium database holder.
    • when a mutation is found by the third party, the cosegregation of the mutation and the MR in the family will be carried out by the consortium member in whose family the mutation was found. If this full member is for whatever reason not in a position to do so, the third party will do it.
    • in case of publication co-authorship of each full member in whose family a mutation was found is the rule. Also "the European XLMR consortium" as such will be a co-author, whereas the names of the remaining full members will be mentioned in the acknowledgments.

      • The logistics and management of requests by third parties will be dealt with by the consortium database holder.

  6. Consortium meetings
    At least twice a year.
    On request of a full member.

Agreement with third party

Third parties wishing to use material from the Euro-MRX consortium must accept the following agreement:

  1. consortium material will not be sent to another party, and will only be used for the requested investigations
  2. the results of the investigations will be sent to the consortium database holder, Dr. H. Yntema
  3. when a mutation is found, the cosegregation of the mutation and the MR in the family will be carried out by the consortium member in whose family the mutation was found. If this full member is for whatever reason not in a position to do so, the third party will do it
  4. in case of publication co-authorship is provided to each full member in whose family a mutation was found. Also "the European XLMR consortium" as such will be a co-author, whereas the names of the remaining full members will be mentioned in the acknowledgements