Improving Care of Children With Endocrine Diseases by Promoting Knowledge and Research

Secretary General: Prof.
Franco Chiarelli
“Improving care of children with endocrine diseases by promoting knowledge and research”
Department of Paediatric & Adolescent Endocrinology

University College London Hospital
250 Euston Road
London NW1 2PQ
Tel: +44 203 447 5240

24th August 2011
Dear Friends,
ESPE International Consensus Meeting on Congenital Hypothyroidism
ESPE has realised the need to seek evidence based guidance in the management of
congenital hypothyroidism, so we have organised a Consensus Meeting. One of the
intentions of this consensus meeting is to provide a global directive in the management
of this important condition. Inevitably organisation of such a meeting is dependent upon
funding which was difficult due to the lack of commercial funding that other consensus
meetings attract. Thanks to major support from the ESPE Council and the Istituto
Superiore di Sanita (Italian Ministry of Health) and a scientific grant from Merck
Serono, we are now in a position to proceed.
A meeting is planned to take place over 2 days, 28-29th November 2011 at the
headquarters of the Istituto in Rome. The suggested topics for evaluation of existing
literature and knowledge are attached and the objective of this meeting will be to
provide evaluation of current evidence and synthesise guidance – both for high and low
income countries.
We would be honoured if Asia Pacific Paediatric Endocrine Society would be willing to

participate. We would suggest 1-2 members with recognised expertise and interest who
have a track record of clinical activity and publishing within a topic category who would
be able to contribute to one or two of the agreed working groups (see attached
document). We anticipate the total number of active participants will be limited to 30 -
35 based on experience of ESPE consensus meetings as any bigger then active
discussion is limited. The consensus meeting funds would be able to cover all the costs
of the delegates within Rome, but we would ask that your Society cover travel costs to
the meeting only. Inevitably, there are responsibilities attached to this to make the
venture a success.
We would hope that the consensus meeting would be a final pulling together and
discussion of the topics to be debated with much of the synthesis of evidence having
taken place beforehand. We therefore suggest the following timetable:
ESPE Secretariat - Euro House, 22 Apex Court, Woodlands, Bristol BS32 4JT, United Kingdom
Tel: +44 (0)1454 642246; Fax: +44 (0)1454 642222; Email: espe@eurospe.org; Website: www.eurospe.org
European Society for Paediatric Endocrinology Limited

Company limited by guarantee Registered in England & Wales Company no: 5766541; Charity no: 1122484
Registered office: 65 Carter Lane, London EC4V 5HF, United Kingdom
Secretary General: Prof. Franco Chiarelli
April- Sept 2011 – convene working groups – a draft of the planned working group
activity and provide draft synthesis of evidence
September 27 2011 - initial meeting for those present at ESPE in Glasgow
October 2011 - draft evidence-based document for general discussion
28-29 November 2011 - Consensus meeting in Rome
February 2012 - submit for publication
We do hope you will be able to take part in this important venture. We look forward to
hearing your response shortly.
Yours sincerely,
Professor Gary Butler

Department of Paediatric and Adolescent Endocrinology
University College London and Great Ormond Street Hospitals, London.
ESPE Chairman of the Clinical Practice Committee and Member of Council.
Juliane Léger
Professor Juliane Léger
Endocrinologie Diabétologie Pédiatrique
Centre de Référence Maladies Endocriniennes de la Croissance
Hôpital Robert Debré, Paris.
Dr Antonella Olivieri
Metabolism and Endocrinology Unit
Department of Cell Biology and Neurosciences
Istituto Superiore di Sanità, Roma

ESPE consensus meeting on Congenital hypothyroidism
List of topics by group
1 – Newborn Screening: Selection of newborns at risk of congenital hypothyroidism

(Toni Torresani)
 What is the evidence for screening CH
 Analysis of CH screening strategies (TSH or TSH+T4, others) in terms of: analytical
methodology, effictiveness, efficacy and costs
 What biochemical criteria should be used for Special categories of newborn at risk of
CH (preterm, very sick babies , born to mothers with thyroid pathologies, early
hospital discharge)
 What biochemical criteria/strategies should be used to confirm a positive CH
screening test
2 – Clinical diagnosis: Selection of patients for management and treatment

(Malcolm Donaldson)
 What biochemical criteria should be used in the decision to initiate treatment
 What criteria should be used to assess severity of CH in term of clinical, biochemical
and radiological features
 What is the place of scintigraphy (and perchlorate discharge test) ultrasonography in
the diagnosis of CH
 Should there be specific evaluation(s) to look after associated malformation(s)
 What special consideration to the treatment and management of CH in patients with
specific associated malformations/etiology: i.e. pesudohypoparathyroidism, Down’s
syndrome, Pendred syndrome…
 Criteria for transient vs permanent form of hypothyroidism. What way should be
used in the decision to discontinue therapy in case of normally sited gland.
 Communication of CH diagnosis to families and involvement of familial
physicians/pediatricians
3- Drug administration and monitoring during infancy, childhood and adulthood

(Heiko Krude/ Annette Gruters)
 What are the currently available therapeutic regimens for L-thyroxine treatment and
how do they compare in terms of efficacy: route of administration (per os, IV), tablets
and solution.
 What are the available protocol for L-thyroxine dosage at start of treatment during
the neonatal period
 How should patients treated for CH be monitored for substitutive L-thyroxine
treatment
 What adverse events may occur in children being treated with L-thyroxine
 How should women treated for CH be monitored during pregnancy

4 – outcomes (Guy van Vliet)

 What are the data regarding long-term outcome of children treated with L-thyroxine
in terms of cognitive function
in terms of growth and puberty
in terms of bone
in terms of cardio vascular and metabolic diseases
in terms of fertility
in terms of quality of life and self esteem
in terms of compliance/adherence to treatment
5- Genetic counselling, indication of molecular biology and antenatal management

(Michel Polak)
 What criteria should be used for genetic counselling
 Should there be specific criteria used to use molecular biology in the diagnosis and
management of CH
 What, if any, is a potential indication for antenatal diagnosis
 What, if any, criteria should be used in the decision to treat a fetus in utero and how
it should be managed


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Secretary General: Prof.

Department of Paediatric & Adolescent Endocrinology

Tel: +44 203 447 5240

ESPE International Consensus Meeting on Congenital Hypothyroidism

We would be honoured if Asia Pacific Paediatric Endocrine Society would be willing to

European Society for Paediatric Endocrinology Limited

Professor Gary Butler

European Society for Paediatric Endocrinology Limited

ESPE consensus meeting on Congenital hypothyroidism

List of topics by group

1 – Newborn Screening: Selection of newborns at risk of congenital hypothyroidism

2 – Clinical diagnosis: Selection of patients for management and treatment

3- Drug administration and monitoring during infancy, childhood and adulthood

European Society for Paediatric Endocrinology Limited

4 – outcomes (Guy van Vliet)

5- Genetic counselling, indication of molecular biology and antenatal management

European Society for Paediatric Endocrinology Limited

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