Bernard-Soulier Syndrome - submit data to registry

Contribute Information to the Bernard-Soulier Syndrome Registry

One of the major purposes of this web site is to help physicians and patients learn more about the Syndrome. It is not clear how many patients suffer from the syndrome or if there is a regional variation in occurrence. We have set up this site so that physicians will contribute to the registry. Patients will remain anonymous and will only be known to their own physician. In time we hope that this registry will act as a resource internationally. If you are a patient we would encourage you to ask your physician to contribute to the site. We also welcome any suggestions to modify this site which will help all those who are involved in this disorder. To contribute information for inclusion on this website, please use the following form.

For further information contact: Prof. Dermot Kenny

Submitting Doctor's Information:

Please note: This form is not functioning at present. Please send details (as described below) to Prof. Dermot Kenny at bernard-soulier@rcsi.ie

* Required information

Referring Doctor: *
Doctor address:*
Doctor phone:*
Doctor e-mail:*

Patient Information:

Patient Date of Birth:
Patient Country of Birth:
Patient Sex:	Male	Female
Platelet Count:
Any other haematological abnormalities:	Yes	No
RBC	Normal	Abnormal
WBC	Normal	Abnormal
History of bruising?	Yes	No
History of hematoma?	Yes	No
History of bleeding?	Yes	No
History of transfusion?	Yes	No
Platelet functions studies done?	Yes	No
Platelet aggregation done?	Yes	No
Normal platelet aggregation to:
ADP	Yes	No
Collagen	Yes	No
Ristocetin	Yes	No

Diagnosis of Bernard-Soulier syndrome confirmed by (Please fill in details)
Has the molecular defect been characterised in this patient?	Yes	No
What is the molecular abnormality?

Please check that you have filled in the correct details.

(click "BSS registry" button to submit data)

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