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RettBASE: IRSA MECP2 Variation Database
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Instructions for Submitters:
Instructions for Submitters.
There are several ways that your mutation data can be submitted to RettBASE:
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Submit your existing database or spreadsheet of mutation results to
us in a single document.
We will in most instances be able to design scripts that will allow
us to directly transfer all relevant information into the database
without having the re-enter data (thereby avoiding transcription
errors of the human kind). This is the ideal method for data
submission if you have already performed a significant number patient
studies.
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Complete the on-line submission form.
Before you can do this you will need to register as a submitter.
Once you have done this, you will have a login name and password,
and if you use this you will no longer have to provide your details
every time you wish to submit a new set of mutation data.
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Print the data submission form from
here
and manually complete it, and fax it to our
secure fax line (612 9845 1864) .
This form is an Acrobat document. If you do not have the software
to open this document, you can download the Acrobat software from
here
Important Notes:
Each mutation will be issued with a unique identifier number that will be
used to link the patient with her/his clinical data in the IRSA Clinical
Database.
We have modified an Excel based document that can generate this unique
identifier, based on the patient's name (including first, middle and last)
and the date of birth.
In recognition of the concerns that researchers may have with regards to
patient confidentiality, there are several ways in which this
identifier number can be generated.
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You can provide us with the patient name (remember first, middle
[if the patient has one] and last name) and date of birth, and we will
generate the identifier number.
The identifying details will reside behind our secure firewall,
preventing possible unauthorised access.
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You download the Excel ID generator file from
here
and create the ID number yourself.
This number can then be included in the submission form you complete
for the patient.
We very highly value your contribution to RettBASE, and in recognition
of this you will be listed as a collaborator in this venture.
In addition, we welcome any questions or comments.
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MECP2 data is curated by:
Dr. John Christodoulou
formerly with
Andrew Grimm.
The MECP2 database and website are maintained by the
Western Sydney Genetics Program.
©2001 Western Sydney Genetics Program