BPSU - News

News from the British Paediatric Surveillance Unit (BPSU)

Now on Twitter!

December 2015

Keep up to date with the latest from BPSU, including our current studies and events, by following us on Twitter.

Twitter logo - British Paediatric Surveillance Unit (BPSU) account@BPSUtweet

BPSU winter bulletin now available to view online

Included are updates on the BPSU rare disease conference in 2016; information on the visual impairment and blindness, ADHD and FGM surveillance. We have also provided study updates on the Rickets and Type 2 Diabetes studies that are midway through their surveillance periods.
 

ADHD transition (CATCh-uS) case definition clarification

This month the surveillance of children and adolescents with ADHD in transition between children’s services and adult services (CATCh-uS) began. Following feedback from reporting clinicians, the study team have refined their reporting instructions as outlined below, please consider this definition when reporting cases.
 
Please report new or existing cases SEEN in the reporting month fitting the following criteria
 
A young person  diagnosed with ADHD taking and wishing to continue taking medication for their ADHD   
AND 
Who you have reviewed within 6 months of your services age-boundary (for many this will be 17.5-18 years of age but some keep young people later and some discharge earlier)
 
Exclude - all 17-18 year olds with ADHD in your case load not meeting above criteria
 

2014-15 Annual Report now available

November 2015

With an introduction by BPSU Chair Dr Richard Reading, this report provides an overview of the work of the BPSU over the year to June, includingincluding reports on the HIV; rubella; syphilis; PIND; Kawasaki disease; HUS, exchange blood transfusion; and acute hepatitis studies.

Download or read on screen

Evidence of contribution to the national surveillance of rare diseases

November 2015

The BPSU has now released its bi-annual contribution analysis for clinicians to include in their revalidation portfolios. If you would like to receive a PDF version of your contribution certification please contact the BPSU Team.

Female Genital Mutilation surveillance commences

November 2015

The study is being led by Dr Deborah Hodes of University College London Hospitals. The study team are hoping to determine the incidence of childhood FGM presenting to doctors; identify reasons for referral, collect demographic and vulnerabilities data; outline clinical presentation, examination findings and medical symptoms and clinical management; and specify physical or mental health treatments, to make recommendations for service delivery. Surveillance will be running for 13 months with a 12 month follow-up.

Read more

ADHD in transition between children's and adult services commences

Surveillance of Children and adolescents with ADHD in transition between children’s services and adult services (CATCh-uS) is due to commence in November 2015. This project focuses on what happens to young people with ADHD when they are too old to stay with children’s services. Surveillance is also being run through the Child and Adolescent Psychiatry Surveillance System at the Royal College of Psychiatrists. Little is known about how many areas have specialist services for adults with ADHD and how many young people need to move to them when they are too old for children’s services.
 

Surveillance oof British childhood visual impairment & blindness (BCVIS2) commences

October 2015

BCVIS2 will be the first national study to determine the incidence, causes, mode/context of detection, associated risk factors, management and short-term outcomes of all-cause childhood visual disability. Expected study outcomes include findings to inform planning of prevention and treatment strategies and a ‘map’ of services involved in detection and management to inform commissioning and delivery.
                           

Nutritional rickets surveillance update

October 2015

Surveillance of nutritional rickets has now entered its sixth month of data collection and a total of 80 cases have been notified. Though the study team recognise that this is a seasonal condition, they are concerned that the study may be under-ascertaining and not all of the cases are being reported. If you have seen any possible cases of rickets that meet the case definition from March 2015 that you have not already reported, please contact the BPSU or report the case on the next orange card.

Applications open for Tizard bursary 2015-16

June 2015

Successful applicants will receive a free slot on the orange card, worth £12,500, plus a £1,000 stipend towards the cost of their training needs.

The bursary is open to training grade doctors at any level or consultant paediatricians (with less than three years in post) wishing to undertake an epidemiological research study into a rare disease or condition that affects children and which addresses a question of clinical or public health importance.

The closing date for applications is 30 October 2015

Find out more

Surveillance of acute rheumatic fever (ARF) commences

May 2015

The study is being led by Dr Mary Salama, Birmingham Children’s Hospital, who was awarded the Tizard Bursary to mount surveillance into ARF. Dr Salama aims to examine how ARF affects children and young people aged 16 or under, the pattern of illness it produces and to see if this differs from the pattern of illness seen in developing countries.

Find out more

Surveillance of Behçet’s syndrome to commence

May 2015

This will run for 13 months with a one-year follow-up. The study is being led by Dr Clare Pain of Alder Hey Children’s Hospital and the study team hope to ascertain the incidence and prevalence of Behçet’s syndrome in children and young people. They hope to examine the clinical presentation and management of the syndrome.

Find out more

Surveillance of Congenital Hypothyroidism (CHT) – three year follow-up to begin

April 2015

The BPSU Scientific Committee has recently approved a final, third year of follow-up for children reported to the BPSU surveillance study of CHT. A final questionnaire will be sent to clinicians who are caring for a child for whom the diagnosis is still unconfirmed or a trial of therapy may be considered. 

Read more

BPSU spring 2015 bulletin now available to view online

Included are updates on the rare disease event that the BPSU held in collaboration with Rare Disease UK and the Youth Advisory Panel, notes on forthcoming studies and extensions to Progressive Intellectual and Neurological Deterioration.
 

Surveillance of Type 2 diabetes in children and young people to commence

March 2015

The study team hope to identify the number of newly diagnosed cases, how this has changed since the previous study ten years ago, how the condition is managed and the one-year outcomes and co-morbidities associated with Type 2 diabetes. The study is being led by Prof Julian Hamilton-Shiled and Dr Abdalmonem Majbar.
 

Living with a rare disease networking event

March 2015

On 5 March the BPSU, in collaboration with Rare Disease UK and the RCPCH Youth Advisory Panel, held an event to mark Rare Disease Day 2015. Over 80 people attended the event including patients and carers, healthcare professionals, researchers and policy makers. Presentations were given by Earl Howe of the Department of Health and Professor John Newton of Public Health England amongst others.

View selected presentations, photos and details of the event

Surveillance of nutritional rickets presenting to secondary care to commence

February 2015

Study in infants under the age of sixteen in the United Kingdom and ROI is due to commence at the end of this month. The study team hope to identify the number of children who are diagnosed with rickets, how it presents in children, and is treated. The study is being led by Prof Mitch Blair and Dr Priscilla Julies.