Scleroderma Australia Inc (ABN 27 563 622 862) provides information and services to those with Scleroderma, their family and friends. While we seek information from you though your registration on our Mailing List, through the post, email or telephone, we are committed to the protection of your privacy.
We primarily collect personal information through the Mailing List on this website. With you agreement we may also retain personal information that you provide by mail, email, telephone or other means.
The information that you provide is entered into our National mailing database and in addition is made available to our Scleroderma Members and Associates (our State and Territory organisations) for local follow-up.
Disclosure of Your Information to Third Parties
In some circumstances there may be opportunities for names and contact details from our database to be provided to appropriate research and allied organisations for use in Scleroderma and associated disease clinical studies. Such disclosure will only be done with your advance permission.
You may access your personal information held by us at any time by contacting us by mail. Should you wish to change your registration details you may do this by filling in a new Mailing List registration form.
We may make changes to our privacy policy from time to time. You should check our privacy policy regularly to see if we have made any changes to it.
A biomarker that can be used to screen sclerosis patients for pulmonary hypertension has shown promise in a proof of concept study.
Researchers from St Vincent’s in Melbourne found asymmetric dimethylarginine (ADMA) levels had an acceptable high specificity and sensitivity for detecting the complication, particularly when used in conjunction with NT-proBNP.
When combined with the biomarker commonly used in heart failure the test had a sensitivity of 93.3% and a specificity of 100% for detecting PAH, said author Vivek Thakker (pictured) from St Vincent’ in Melbourne who presented his poster during a tour led by Wendy Stevens from the same hospital.
Testing for ADMA was not widely available but cost $60 a test, significantly cheaper than echocardiography, he said.
But the results needed to be validated in larger cohorts, he added.
