European Congenital Erythrocytosis Consortium (ECE-C) Guidelines

1 - The European Congenital Erythrocytosis Consortium (ECE-C) is a non-profit organization formed by clinical pediatrics, hematologists and molecular geneticists committed to improve quality of patient care related to clinical and genetic diagnostic of Congenital Erythrocytosis.

2 - Congenital Erythrocytosis is a rare disease with only small numbers of patients reported by the various investigators, the aim of the ECE Consortium is to collect a large cohort of patients to better define the molecular and clinical features of this disease.

3 - Membership in the ECE Consortium is open to all individuals and laboratories involved in clinical, molecular diagnosis and research related with Congenital Erythrocytosis who are committed to free data sharing and to participation in a process to develop evidence-based standards and guidelines to improve patient care.

4 - The Consortium will share data in an already established database (www.erythrocytosis.org). This database allows the registry and follow-up of patients. Clinical diagnostic laboratories and institutions taking care for CE patients are encouraged to submit data for each CE patient diagnosed. The ECE-C is interested in ascertaining each individual case of CE not already reported in the database, even if the mutations have already been reported in other patients. Data entry will be deposited in the database after checking by the Curators of the database.

5 - Each member can have access only to the data of the patients he reported, only statistics on clinical and mutation data will be accessible to all the Consortium members. A table with all the associated CE mutations already published and those that have been submitted to the data base will be accessible in the database and in the Leiden Open Source Variation Database (LOVD) databases.

6 - Membership will be open to all who agree to abide by the rules regarding the use and acknowledgement of data provided by the Consortium.

7 - Credit for novel discoveries such as new mutations or particular population associations will be based on the date of electronic submission of the data to the Consortium editors. Consortium members retain the right to publish data which they contributed without prior consultation with the Consortium.

8 - Consortium data should be treated as a privileged communication which should not be disseminated without the consent of the Consortium. Oral or written communications must acknowledge the Consortium as the source of the data, and give credit to the group who originally provided the data.

9 - The Consortium may decide to publish pooled data when appropriate. Papers may cite the Consortium as the "author", or may be multi-author publications with authorship status dependent on the contribution of the participating groups. Members will be encouraged to submit data before or at least at the time of submission for publication. Only the consortium members that have registered patients in the database will appear in the articles as co-authors.

10 - The Consortium will not accept responsibility for inappropriate diagnostic use of the data, or for diagnostic errors which might result from use of the data. We have used all reasonable efforts to ensure that the information displayed on these pages and contained in the databases is of high quality. We make no warranty, express or implied, as to its accuracy or that the information is fit for a particular purpose, and will not be held responsible for any consequences arising out of any inaccuracies or omissions. Individuals, organizations and companies which use this database do so on the understanding that no liability whatsoever either direct or indirect shall rest upon the curators or any of their employees or agents for the effects of any product, process or method that may be produced or adopted by any part, notwithstanding that the formulation of such product, process or method may be based upon information here provided. (Adapted with permission from “Fanconi Anemia Mutation Consortium Guidelines” by the Rockefeller University)

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