On the 30th of October several professional medical societies and patient-led organisations joined forces in signing the Amsterdam Declaration. The ceremony took place during the 10th International Symposium on Graves’ orbitopathy (Figure 1).
The Amsterdam Declaration (Table 1) is about improving care for people with thyroid eye disease focusing on early diagnosis and intervention, collaborative research and education.
In total 68 cosignatories (14 international professional societies, 43, national professional societies, 11 patient-led organisations) have thus far supported the Amsterdam Declaration (Table 2).
For further information on the Amsterdam Declaration contact Dr Petros Perros petros.perros@nuth.nhs.uk.
TABLE 1
Graves’ orbitopathy: improving outcomes for Thyroid eye disease
The Amsterdam Declaration 2009
Graves’ orbitopathy affects hundreds of thousands of people in the world every year. It causes pain, discomfort, double vision, disfigurement and sometimes blindness. People suffering with Graves’ orbitopathy have a poor quality of life and long-term psychosocial morbidity. The quality of care received by the majority of people affected by this condition can be improved. Conventional treatments are effective when used appropriately and by centres with expertise. Not all patients are offered effective treatments either because most are not referred early or not at all. People at high risk of developing Graves’ orbitopathy can be identified and effective risk management can potentially lessen the severity of the disease.
The care of people with Graves’ orbitopathy can be improved vastly by making centres of excellence more accessible to them.
In October 2009, international experts on Graves’ orbitopathy, representatives of professional organisations and patient representatives met in Amsterdam and unanimously agreed on the following:
Health care providers and professional organisations should recognise the need to improve the care of people with Graves’ orbitopathy and support plans for implementing better care and prevention.
The general objectives are:
to minimise the morbidity associated with Graves’ orbitopathy and improve the patients’ experience and quality of life
prevent the development of Graves’ orbitopathy in people at high risk
The 5-year targets are:
Raise awareness of this condition among health care professionals and managers
Establish pathways of referral and care
Support existing centres of excellence in management of this condition
Create new centres of excellence in localities where they are lacking
Establish audit and monitoring mechanisms of quality assurance of provision of care to people with Graves’ orbitopathy
Implement measures to reduce the incidence and morbidity of the disease by
halving the time from presentation to diagnosis
halving the time from diagnosis to referral to a centre of excellence
appropriate management of thyroid dysfunction including use of radioiodine
vigorous anti-smoking measures in patients at risk of or with Graves’ orbitopathy
Improve the existing research networks and develop further international collaborative research
TABLE 2
Cosignatories of the Amsterdam Declaration
International professional societies
Academia Ophthalmologica Europea
Academia Ophthalmologica Internationalis
American Thyroid Association
Asia Pacific Society of Ophthalmic Plastic and Reconstructive Surgery
European Association for Vision and Eye Research (EVER)
Endocrine Society
European Group on Graves’ Orbitopathy
European Society of Endocrinology
European Society of Orbital Plastic Reconstructive Surgery
European Thyroid Association
Iberico-American Society of Ophthalmic Plastic and Orbital Surgery
International Thyroid Eye Disease Study Group
Latin-American Thyroid Society
World Society of Pediatric Ophthalmology and Strabismus (WSPOS)
National professional societies
All India Ophthalmological Society
American Association of Clinical Endocrinologists
Argentina Council of Ophthalmology
Argentina Society of Ophthalmology
Belgian Endocrine Society
Belgian Thyroid Club
Bielschowsky-Gesellschaft für Schielforschung und Neuroophthalmologie
British Oculoplastic Surgery Society
British Thyroid Association
Chinese Society of Ophthalmology
Cyprus Endocrine Society
Danish Thyroid Association
Dutch Endocrine Society
Finnish Endocrine Society
French Endocrine Society
French Society of Ophthalmic Plastic Reconstructive and Aesthetic Surgery
German Endocrine Society
German Thyroid Board
German Society of Ophthalmology
Hellenic Endocrine Society
Italian Association of Medical Endocrinologists
Italian Society of Endocrinology
Italian Society of Ophthalmic Plastic Surgery
Italian Thyroid Association
Irish Endocrine Society
Japan Thyroid Association
Japanese Society of Ophthalmology
Macedonian Endocrine Association
Oculoplastic Association of India
Ophthalmological Society of Portorico
Philippine Society of Ophthalmic Plastic and Reconstructive Surgery
Philippine Academy of Ophthalmology
Polish Thyroid Society
Romanian Society for Endocrinology
Royal College of Ophthalmologists (UK)
Serbian Endocrine Society
Slovak Endocrine Society
Società Oftalmologica Italiana
Society for Endocrinology (UK)
South African Society of Oculoplastic Surgeons
Spanish Society of Ophthalmic Plastic and Orbital Surgery
Swiss Endocrine and Diabetes Society
Turkish Society for Endocrinology and Metabolism
Thyroid patient associations
Association Vivre sans Thyroïde
British Thyroid Foundation
Finnish Thyroid Foundation
Italian Thyroid Patient Association
Nederlandse Vereniging van Graves’ Patiënten
Schildklierstichting Nederland
Svenska Sköldkörtel Föreningen
Thyroid Eye Disease charitable trust (UK)
Thyroid Federation International
Verein Schilddrüsengruppe Schweiz
United States of America Graves’ Disease Foundation
