Back to services

Centre for Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD)

How our service can help you

The Centre of Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD) provides whole-person medicine and integrated mental and physical health care for children and young people with complex, severe, and treatment-resistant co-occurring neuropsychiatric disorders and medical conditions including rare diseases.

We offer a service for children and young people aged 2-18 years with treatment resistant neuropsychiatric disorders. We also see children and young people aged 2 to 25 years old with neuropsychiatric symptoms arising as a result of rare diseases such as Rett syndrome.

We provide a service for children and young people with a variety of neuropsychiatric disorders, in the context of neuroinflammatory, metabolic, genetic or neurodegenerative disorders and acquired brain injury; psychotropic-induced side-effects and neuropsychiatric aspects in children with terminal illness.

We have specific programs for those with emotional behavioural autonomic dysregulation (EBAD), Rett syndrome, Mucopolysaccharidoses, and other rare disorders.

  • Service Type: Child and Adolescent Mental Health Services (National and Specialist) Service Borough Covers: National (Child and Adolescent services) Treatment type: Outpatient
  • Contact the service

    Site Location: Maudsley Hospital Email: cipp@slam.nhs.uk Phone Number: 020 3228 3900
  • Disabled Access:
    • Wheelchair accessible building
    • Ground floor therapy rooms
    • Accessible toilets on all levels
    • Lift access to the 1stfloor.
  • Address: Michael Rutter Centre
    Maudsley Hospital
    De Crespigny Park,
    London,
    SE5 8AZ
  • Business Hours/Visiting Hours: Monday to Friday, 9am to 5pm
  • Other essential information

  • Conditions: Attention deficit hyperactivity disorder (ADHD), Autism, Bipolar disorder, Childhood degenerative disorders, Depression, Dissociative disorders, Learning disabilities, Neuropsychiatry , Obsessive compulsive disorder (OCD), Persistent physical symptoms, Psychosis

Interventions

Our approach is to provide ongoing assessment and review leading to multi-modal personalised care based on a bio-psycho-social approach, which includes:

  • Comprehensive assessment with the child and young person (depending on abilities) and their parents or carers to clarify diagnostic status, in particular neurodevelopmental and neuropsychiatric disorders
  • Information is collated by using the HealthTrackerTM, a health monitoring platform that allows us to get online questionnaires completed by multiple sources (for example, child, parent, schools, other agencies); and audio and video conferencing methods in addition to face-to-face assessment
  • We use sensor-based wearable technology for psychophysiological monitoring
  • We routinely risk stratify all our patients and offer increased clinical contact based on patient complexity and risk
  • Information gathered using HealthTrackerTM and the biometric data assist in personalised treatment decision-making, and biometric guided pharmacological and non-pharmacological interventions.
  • Pharmacological treatment (in liaison with other medical departments across the UK as required)
  • Consultant clinical psychologist-led modified individual and family interventions (where appropriate); advice and support for parents or carers, social care and education colleagues are provided when necessary
  • The consultant clinical psychologists provide clinical consultation and advice to local child and adolescent mental health services (CAMHS) colleagues as needed
  • We work using a shared care strategy with local CAMHS, paediatrics and GPs



CIPPRD/CPMRS approach is to provide personalised care, based on a bio-psycho-social approach, and includes:
 

  • Comprehensive assessment with the child and young person (depending on abilities) and their parents or carers to clarify diagnostic status, in particular neurodevelopmental and neuropsychiatric disorders
  • Ongoing collation of information is collated by using the HealthTrackerTM, a health monitoring platform that allows us to get online questionnaires completed by multiple sources (for example, child, parent, schools, other agencies); and audio and video conferencing methods in addition to face-to-face assessment
  • We use sensor-based wearable technology for psychophysiological monitoring
  • Information gathered using HealthTrackerTM and the biometric data assist in personalised treatment decision-making, and biometric guided pharmacological and non-pharmacological interventions
  • We provide pharmacological and psychological treatment and liaise with other medical departments across the UK as required
  • Advice and support to parents, carers, CAMHS, education colleagues on non-pharmacological treatments
  • We work using a shared care strategy with local CAMHS, paediatrics and GPs


Treatment during the Covid-19 period has been adapted so that parents and carers, and patients (where able), can complete online HealthTrackerTM questionnaires longitudinally so that automatic alerts are raised if there is a significant change in mental or physical health risk, including Covid-19 risks (Figure below):
patient centred care in CIPPRD and CPRMS


The diagram below shows what we do after assessment:

patient centred care and shared decision making in CIPPRD

CIPPRD / CPMRS process of providing treatment includes:

  • Assessment by multidisciplinary team led by consultants in neuropsychiatry and clinical psychology, with a goal of diagnostic clarification, care plan review and intensive risk management
  • We provide psychopharmacological interventions (including experimental medications) alongside psychological interventions
  • Our consultant clinical psychologists sometimes provide modified cognitive behavioural therapy (CBT), biometric guided interventions, group interventions, and advice on behavioural programmes where appropriate
  • We use sensor-based psychophysiological monitoring and HealthTrackerTM-based patient-centred outcome monitoring and risk-stratification to provide care
  • We provide regular virtual monitoring through online, audio or video conferencing, or face-to-face input to fine-tune pharmacological and psychological interventions to optimise treatment response.
  • We routinely liaise with local services, GPs, medical specialists (paediatrics, cardiology, neurology, haematology, endocrinology, genetics), social care and education
  • We provide an adult transition package with local services as needed
  • We provide holistic care for Rett syndrome and also conduct clinical trials with novel treatments and use sensor-based psychophysiological monitoring, patient-centred outcome monitoring using HealthTrackerTM as part of routine care

Eligibility criteria

Age range for various types of disorders that are assessed and managed in the Centre for Interventional Paediatric Psychopharmacology and Rare Diseases (CIPPRD).

Children and young people (CYP) aged two to 18 years old with:
 

  • Complex neuropsychiatric difficulties in the context of multiple co-morbid disorders (for example, attention deficit hyperactivity disorder (ADHD), autism spectrum disorders (ASD), obsessive compulsive disorder (OCD), anxiety disorders, Tourette’s syndrome, psychosis, depression)
  • Neuropsychiatric or psychopharmacological difficulties in children being considered for psychiatric inpatient admission with a view to prevent admission
  • Neuropsychiatric or psychopharmacological difficulties within a psychiatric inpatient or residential setting, with a view to earlier discharge
  • Difficulties in the context of bipolar disorder, early onset psychosis or catatonia
  • Managing emotional, behavioural and autonomic dysregulation (EBAD) in multi-morbidity
  • Complex psychopharmacological needs in those with treatment resistant neuropsychiatric disorders
  • Children with history and high risks of serious medication-related side-effects such as tardive dyskinesia and cardiac complications
  • Complex and serious side effects associated with treatment
  • Children who have multiple comorbidities and present with severe mental health needs or risks and severe challenging behaviour
  • Children with treatment-resistant disorders, especially in the context of previous failed multiple pharmacological interventions
  • Children where multi-agency co-working is essential to optimise outcomes


Children and young people (CYP) from brith to 25 years old with neuropsychiatric symptoms arising in the context of organic conditions or rare diseases such as neuropsychiatric disorders, in the context of neuroinflammatory, metabolic, genetic or neurodegenerative disorders, acquired brain injury and neuropsychiatric aspects in children with terminal illness:
 

  • Neuropsychiatric disorders or loss of skills in the context of genetic or neurodegenerative disorders (for example, metabolic disorders such as Hurler’s syndrome, Hunter’s syndrome, Sanfilippo, Gaucher’s disease, Niemann-Pick Type C). We have specific programmes for mucopolysaccharidoses and septo-optic dysplasia
  • Children with acquired brain injury, including those admitted in Tadworth Children’s Trust for neurorehabilitation
  • Children who need medication to manage psychopathology in medically high-risk groups such as cardiomyopathy and those with organ transplants
  • Neuropsychiatric difficulties requiring pharmacological interventions in those with neurological, cardiac, hepatic, renal, or endocrinal dysfunction
  • Pharmacological and non-pharmacological interventions to improve quality of life in those with physical and terminal illnesses
  • Children where multi-agency co-working is essential to optimise outcomes


Children and people across the whole lifespan with Rett syndrome are assessed and managed in the Centre for Personalized Medicine in Rett Syndrome (CPMRS).
 

  • Managing complex and serious side effects associated with treatment
  • Children where multi-agency and multi-specialty co-working is essential to optimise outcomes
  • Providing the ability to participate in state-of-the-art innovative clinical trials
  • Emotional, behavioural and autonomic dysregulation (EBAD) in Rett syndrome across the life span (shown in figure from CPMRS publication below)

eligibility criteria

All patients who are referred to CIPPRD require CCG funding and shared-care with local services.

Outcomes

We routinely capture clinical outcomes and monitor it longitudinally using the HealthTrackerTM platform, which is a health-monitoring platform that allows children as young as five years to chart their progress using animated, gamified questionnaires; collects multi-source information from parents, family, school, and other settings.

An example of how outcomes are monitored in the CIPPRD/CPMRS patient is provided below:

healthlocker screenshot 2
 

  • We are recognised nationally and internationally as a centre of excellence and have many professionals from all over the world coming and learning the CIPPRD model of care, because of the clinical outcomes that we achieve
  • We regularly monitor global generic and CIPPRD or CPMRS specific clinical outcomes at both an individual patient level as well as the whole clinic level
  • We complete life-time medication risk or benefit ratios and provide the treatments that are most effective, with least side-effects
  • We improve symptoms, reduced functional impairment, improve quality of life and participation, and decrease the need for inpatient stay
  • Innovative pharmacological and behavioural strategies have produced 90% good or excellent improvement on target-specific clinical global impression (TS-CGI) – improvement
    Less than 8% of children referred have required inpatient admissions
  • Over 85% of children with neurodegenerative disorders, including childhood dementias, have shown good or excellent response on TS-CGI. We are the only clinic currently specialising in psychopharmacology of these disorders
  • Serious psychotropic-related side-effects such as tardive dyskinesia has been successfully treated in the majority of children referred to the clinic
  • We have successfully completed the UK’s first clinical trial in Rett syndrome.
  • We are also involved in two ongoing clinical trials for Rett syndrome
  • We provide comprehensive assessment and clinical care in Rett syndrome across the life-span and we prevent drug-drug interactions arising from multi-speciality prescribing
     

An example of the published 12-Months Outcomes of in CIPPRD patients is given below:

12 months outcomes of low dose aripiprazole use in CIPPRD


An example of how psychophysiological parameters change longitudinally (measured by sensors) in a patient:

outcomes: ASD, ADHD, ODD, GAD, depression

Care Options

Outpatient

Care option: Assessment

Unit: 12 months

Description: A comprehensive assessment with the child or young person (depending upon abilities) and their parents or carers to clarify diagnostic status, in particular neurodevelopmental and neuropsychiatric disorders. Information is collated using internet based questionnaires, paper questionnaires, audio-conferencing and video-conferencing methods in addition to face-to-face assessment and information from a variety of sources is included, for example child, parent, schools, other agencies.

Use of wearable technology using HealthTrackerTM for psychophysiological monitoring to inform medication use, treatment decision-making, and biometric guided non-pharmacological interventions for personalised care.

Treatment months one to six
Medication initiation, monitoring and stabilisation. Nonpharmacological treatment and support to parents or carers, as well as child and adolescent mental health services (CAMHS) and educational colleagues.

Treatment months seven to 12
Pharmacological intervention modifications. Non-pharmacological treatment and support to parents or carers and CAMHS and educational colleagues. 
 


Care option: Treatment

Unit: Per session

Description: 13 months onwards pharmacological and psychological review and treatment. 
 


Care option: Training

Unit: Per day

Description: Training is available on topics relating to the assessment, treatment and management of children and young people with complex neurodevelopmental and neuropsychiatric disorders in the context of a range of physical conditions. 

Resources

You can also find more information about the Centre for Interventional Paediatric Psychopharmacology Research Team can also be found on our page on the  Kings College London website.

The following are some of the peer reviewed publications from the CIPPRD / CPMRS team.
 

  • Pennap D, Zito JM, Santosh PJ, Tom SE, Onukwugha E, Magder LS. Continuity of Care and Mental Health Service Use Among Medicaid-enrolled Youths. Med Care. 2020 Mar;58(3):199-207. doi: 10.1097/MLR.0000000000001255.

 

  • Singh J, Lanzarini E, Santosh P. Autonomic Dysfunction and Sudden Death in Patients with Rett Syndrome: A Systematic Review. Journal of Psychiatry and Neuroscience. J Psychiatry Neurosci. 2019 Nov 8;45(1):190033. doi: 10.1503/jpn.190033.

 

  • Sheehan R, Strydom A, Marston L, Morant N, Fiori F, Santosh P, Hassiotis A. A structured medication review tool for psychotropic medication optimisation in adults with intellectual disability. BMJ Open 2019 Dec 15;9(12):e033827. doi: 10.1136/bmjopen-2019-033827.

 

  • Reddihough DS, Marraffa C, Mouti A, O'Sullivan M, Lee KJ, Orsini F, Hazell P, Granich J, Whitehouse AJO, Wray J, Dossetor D, Santosh P, Silove N, Kohn M. Effect of Fluoxetine on Obsessive-Compulsive Behaviors in Children and Adolescents With Autism Spectrum Disorders: A Randomized Clinical Trial. JAMA. 2019 Oct 22;322(16):1561-1569.

 

  • Craig MC, Mulder LM, Zwiers MP, Sethi A, Hoekstra PJ, Dietrich A, Baumeister S, Aggensteiner PM, Banaschewski T, Brandeis D, Werhahn JE, Walitza S, Castro-Fornieles J, Arango C, Schulze UME, Glennon JC, Franke B, Santosh PJ, Mastroianni M, van Asten JJA, Buitelaar JK, Lythgoe DJ, Naaijen J. Distinct associations between fronto-striatal glutamate concentrations and callous-unemotional traits and proactive aggression in disruptive behavior. Cortex. 2019 Dec;121:135-146. doi: 10.1016/j.cortex.2019.08.017. Epub 2019 Sep 19.

 

  • Milestone Consortium, Russet F, Humbertclaude V, Dieleman G, Dodig-Ćurković K, Hendrickx G, Kovač V, McNicholas F, Maras A, Santosh P, Paul M, Schulze UME, Signorini G, Street C, Tah P, Tuomainen H, Singh SP, Tremmery S, Purper-Ouakil D. Training of adult psychiatrists and child and adolescent psychiatrists in europe: a systematic review of training characteristics and transition from child/adolescent to adult mental health services. BMC Med Educ. 2019 Jun 13;19(1):204. doi: 10.1186/s12909-019-1576-0.

 

  • Rodríguez-Quiroga A, Flamarique I, Castro-Fornieles J, Lievesley K, Buitelaar JK, Coghill D, Díaz-Caneja CM, Dittmann RW, Gupta A, Hoekstra PJ, Kehrmann L, Llorente C, Purper-Ouakil D, Schulze UME, Zuddas A, Sala R, Singh J, Fiori F, Arango C, Santosh P; STOP Consortium. Development and psychometric properties of the "Suicidality: Treatment Occurring in Paediatrics (STOP) Risk and Resilience Factors Scales" in adolescents. Eur Child Adolesc Psychiatry. 2019 May 3. doi: 10.1007/s00787-019-01328-2.

 

  • Hendrickx G, De Roeck V, Russet F, Dieleman G, Franic T, Maras A, McNicholas F, Paul M, Santosh P, Schulze U, Signorini G, Singh SP, Street C, Tuomainen H, Verhulst F, Wolke D, Purper-Ouakil D, Tremmery S; MILESTONE Consortium. Transition as a topic in psychiatry training throughout Europe: trainees' perspectives. Eur Child Adolesc Psychiatry. 2019 Mar 9. doi: 10.1007/s00787-019-01309-5. [Epub ahead of print]

 

  • Carballo JJ, Llorente C, Kehrmann L, Flamarique I, Zuddas A, Purper-Ouakil D, Hoekstra PJ, Coghill D, Schulze UME, Dittmann RW, Buitelaar JK, Castro-Fornieles J, Lievesley K, Santosh P, Arango C; STOP Consortium. Psychosocial risk factors for suicidality in children and adolescents. Eur Child Adolesc Psychiatry. 2019 Jan 25. doi: 10.1007/s00787-018-01270-9.

 

  • Singh J, Santosh P. Key issues in Rett syndrome: emotional, behavioural and autonomic dysregulation (EBAD) - a target for clinical trials. Orphanet J Rare Dis. 2018 Jul 31;13(1):128. doi: 10.1186/s13023-018-0873-8. Review.

 

  • Sagar-Ouriaghli I, Milavic G, Barton R, Heaney N, Fiori F, Lievesley K, Singh J, Santosh P. Comparing the DSM-5 construct of Disruptive Mood Dysregulation Disorder and ICD-10 Mixed Disorder of Emotion and Conduct in the UK Longitudinal Assessment of Manic Symptoms (UK-LAMS) Study. Eur Child Adolesc Psychiatry. 2018 Sep;27(9):1095-1104. doi: 10.1007/s00787-018-1149-5. Epub 2018 May 5.

 

  • Pennap D, Zito JM, Santosh PJ, Tom SE, Onukwugha E, Magder LS. Patterns of Early Mental Health Diagnosis and Medication Treatment in a Medicaid-Insured Birth Cohort. JAMA Pediatr. 2018 Jun 1;172(6):576-584. doi: 10.1001/jamapediatrics.2018.0240.

 

  • Sagar-Ouriaghli I, Lievesley K, Santosh PJ. Propranolol for treating emotional, behavioural, autonomic dysregulation in children and adolescents with autism spectrum disorders. J Psychopharmacol. 2018 Jun;32(6):641-653. doi: 10.1177/0269881118756245. Epub 2018 Feb 27.

 

  • Howes OD, Rogdaki M, Findon JL, Wichers RH, Charman T, King BH, Loth E, McAlonan GM, McCracken JT, Parr JR, Povey C, Santosh P, Wallace S, Simonoff E, Murphy DG. Autism spectrum disorder: Consensus guidelines on assessment, treatment and research from the British Association for Psychopharmacology. J Psychopharmacol. 2018 Jan;32(1):3-29.

 

  • Santosh PJ, Lievesley K, Fiori F, Singh J (2017). Development of the Tailored Rett Intervention and Assessment Longitudinal (TRIAL) database and the Rett Evaluation of Symptoms and Treatments (REST) Questionnaire. BMJ Open. 2017 Jun 21;7(6):e015342.

 

  • Santosh P. Stimulant Medication to treat attention-deficit/hyperactivity disorder (2017). BMJ. 2017 Jul 14;358:j2945. doi: 10.1136/bmj.j2945.

 

  • Singh J and Santosh P (2017). Psychopharmacology of Neurodevelopmental Disorders in Children, (Chapter). In Savita Malhotra and Paramala Santosh (Eds): in Child and Adolescent Psychiatry: Asian Perspectives. Edition 1, Springer. Nature. 978-81-322-3617-7, 338724_1 (18) pp. 325-362.

 

  • Santosh PJ, Singh J (2016). Drug Treatment of Autism Spectrum Disorders and their Comorbidities in Children. British Journal of Psychiatry Advances. 22, pp. 151-161.

 

  • Santosh P, Tarver J, Gibbons F, et al. (2016) Protocol for the development and validation of a questionnaire to assess concerning behaviours and mental health in individuals with autism spectrum disorders: Assessment of Concerning Behaviour (ACB) scale. BMJ Open 2016;6:e010693. doi:10.1136/bmjopen-2015- 010693.

 

  • Santosh P, Bell L, Fiori F, Singh J (2016): Pediatric Antipsychotic Use and Outcomes Monitoring. J Child Adolesc Psychopharmacol. 2017 Aug;27(6):546-554. doi: 10.1089/cap.2015.0247. Epub 2016 Sep 8.

 

  • Santosh PJ, Bell L, Lievesley K, Singh J and Fiori F (2016): Paradoxical Physiological Responses to Propranolol in a Rett Syndrome Patient: A Case Report. BMC Pediatr. 2016 Nov 29;16(1):194.

 

  • Santosh, P, Gringras, P, Baird, G. and Sala, R. (2015): Development and psychometric properties of the Profile Of Neuropsychiatric Symptoms (PONS) in children and adolescents. BMC Paediatrics. May 19;15:62.

 

  • Gettings S, Franco F, Santosh P (2015): Facilitating support groups for siblings of children with neurodevelopmental disorders using audio-conferencing: a longitudinal feasibility study Child and Adolescent Psychiatry Mental Health 2015 Apr 7;9:8. doi: 10.1186/s13034-015-0041-z. eCollection 2015.

Our experts

Prof Paramala Santosh, Consultant Child and Adolescent Psychiatrist - Read more

Dr Kitty Kwan, Consultant Clinical Psychologist - Read more

Dr Elaine Chung, Locum Consultant Child and Adolescent Psychiatrist - Read more

Dr Ruksana Ahmed, Consultant Clinical Psychologist - Read more

Global Banner