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International LOWE
(OCRL1) SYNDROME PATIENT Registry
To better
understand the disease an
international registry is being established. Confidentiality of personal information regarding incidence, genetics,
clinical course and prognosis is provided to professionals and
families. Your cooperation in registering and in helping to
contribute information on Lowe individuals to the registry is
greatly appreciated. Please print out and complete the form
hand written or typed. Also please add any extra information,
pictures or extra pages.
Registration of Lowe Subject
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Name:
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_______________________________________________________________.
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Title:
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_______________________________________________________________..
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Specialty:
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_______________________________________________________________..
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Address with Postcode and Country:
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_______________________________________________________________..
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Telephone/ email:
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_______________________________________________________________..
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The information I have provided may be summarized and
communicated to other health care professionals if there is proper
acknowledgement and the patient's identity remains confidential.
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Signature _________________
Date ______________________
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Please Return completed signed form to:
The Lowe Subject Registrar
Lowe Syndrome Trust
77 West Heath Road.
London NW3 7TH
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Today's Date:
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__________________________________________________________
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lowe Subjects Name:
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__________________________________________________________
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Birth Date:
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__________________________________________________________
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Address with Postcode and Country
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_________________________________________________________
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Age diagnosis was made:
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__________________________________________________________
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By Whom:
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Name: ____________________________________________________
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Address:
__________________________________________________________
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Subject's personal physician or family doctor:
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Name: _____________________________________________________
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Address:
__________________________________________________________
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What was reason for ascertainment (what
symptoms):
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____________________________________________________________________________
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What is subjects
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Weight:
_________________________________________________________
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Height: _________________________________________________________
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Medical
problems:
_______________________________________________________________.
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Name
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Sex
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Birth Date
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Medical
Problems
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1. _______________
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____
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_________
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_________________________________________
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2 _______________
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____
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_________
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_________________________________________
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3. _______________
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____
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_________
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_________________________________________
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4. _______________
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____
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_________
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_________________________________________
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What school(s) have been attended. Please
indicate if these are normal or special needs only. Please comment
on the local social and education services support if any, for
special educational needs.
____________________________________________________________________________
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Any family history of the disorder? If yes,
what relatives?
____________________________________________________________________________
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Has subject been reported in medical
literature? If so, where and when.
____________________________________________________________________________
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Other history / medicines / behaviors /
observations / you may consider relevant.
____________________________________________________________________________
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Is the subject listed in the LSA membership or
with any other medical support group?
___________________________________________________________________________
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