NZCPR Launch Newsletter
The New Zealand Cerebral Palsy Register (NZCPR) has just produced its first newsletter featuring updates, online notification, frequently asked questions and NZCPR contacts.
In the update section NZCPR welcomes back Dr Anna Mackey from maternity leave and discloses, facilitating locality ethics approvals and promoting the NZCPR through presentations and growing ascertainment rates, have been the focus of its work. It also reveals that the CP Society and Starship Family Information Service have been instrumental in promoting the register to their members and health professionals. As a result there has been a significant number (15% of current registrations) of individuals with CP or families and caregivers register their own information on its website.
Another function of the newsletter is to promote its new website nz.cpregister.com/ and new online NZCPR Notification card nz.cpregister.com/Notify.
Plans for 2016 include seeking expressions of interest to establish a NZCPR Governance Committee and Advisory Board, increasing NZCPR recruitment and ascertainment rate, and continuing to work with DHB’s with outstanding locality approval.
In the frequently asked questions section answers are given on How can I participate? How to become a Health Professional member of the NZCPR. Where can I get information on the NZCPR? How much of my time is required to participate? Can information on the NZCPR site be altered? And how have the NZCPR ‘Causes of CP ‘section changed?
When answering the question on altering the website it said “The NZCPR team is responsible for verifying and approving all the information of a registration / new case. Once we have approved a registration the data is available for reporting and can only be amended by the NZCPR.
There is also a “jurisdiction” facility on the NZCPR to allow a nominated person from each DHB to have administration rights to the NZCPR.” Please contact the NZCPR team for more information.
Click Here: to download the NZCPR newsletter