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How we can help with CIPP Rett Centre referral

05/08/2022

The CIPP Rett Centre is a clinical treatment and research centre for children and adults with Rett Syndrome and related disorders of all ages, core-funded by Reverse Rett.

Based at King’s College Hospital, the Centre looks after some of the UK’s most complex children, adolescents and adults with Rett Syndrome. They also monitor many other patients nationally through the CIPP Rett Database and conduct clinical trials.

Typically, the CIPP Rett Centre cares for patients with Rett Syndrome of any age, who are struggling with emotional, behavioural or autonomic issues, including things like breathing irregularities and dystonia. Patients with Rett Syndrome can also become more complex due to being on multiple medications, so once your loved one is under 2 or more specialities and on three or more medications, it is a good idea to sign up for CIPP Rett monitoring, even if you do not feel you need a full assessment.

Both for a full referral and for CIPP Rett monitoring, parents/carers will be asked to complete some online questionnaires, which will help the team better understand the symptoms your loved one is experiencing.

If you are requesting an assessment by the Centre, they will use the completed questionnaires to assess your situation and to prioritise the referral. They will also get in touch with your local GP or other doctor directly because it is important for the teams to work together to ensure the best possible outcome in terms of treatment.

CIPP Rett monitoring will allow the CIPP Rett team to establish what the individual’s baseline/normal symptom variability is and then to be able to identify when there are changes which need to be addressed. They can also cross check medication contra-indications, monitor side-effects and look out for medications which may prolong the QT interval.

You do not need to go through Reverse Rett to access the CIPP Rett Centre. The Centre accepts referrals from a variety of sources. These include Consultants from various specialities (including paediatricians and neurologists), GPs, patient organisations and self-referrals. However, we can help you with both general and urgent referrals so please don’t hesitate to get in touch if this is something that would be helpful to you.

It does not cost patients and families anything to access the Centre.

To refer a patient to the CIPP Rett Centre, or to request monitoring, pls email: cpmrs@slam.nhs.uk or contact cipp_rett@reverserett.org.uk for more info.