The CIPP Rett Centre accepts referrals from a variety of sources. These include Consultants from various specialities (including paediatricians and neurologists), GPs, patient organisations and self-referrals. To refer a patient to the CIPP Rett Centre, email: firstname.lastname@example.org or contact email@example.com for more info.
CIPP Rett Centre intervention is based on a holistic multi-modal approach. As part of the referral process, parents/carers will be asked to complete a battery of online questionnaires which will inform the acceptance and prioritisation of the referral. Local services are expected to be either involved or be willing to work within a Shared Care Protocol in order to optimise outcomes quickly.
The CIPP Rett Database is an online system through which the CIPP Rett team are able to monitor the well-being of UK patients with Rett Syndrome and related disorders at a distance.
Being part of the CIPP Rett Database is also a way of helping with efforts to bring about treatments for Rett Syndrome.
The more patients who are on the database, the more information the team is able to gather about Rett Syndrome, how it affects UK patients and the need for treatment.
You can add your child or adult with Rett Syndrome to the CIPP Rett Database by emailing: firstname.lastname@example.org.