Where do we get our medical information from?
AMEND is very much guided on the production of our information resources by our Medical Advisory Team who are all experts in their fields.
Information about the medical disorders is based upon the following:
- Martucci, VL and Pacak, K, ‘Pheochromocytoma and paraganglioma: diagnosis, genetics, management and treatment’, Curr Probl Cancer 38 (2014), 7-41 Elsevier
- Amar L et al, An International consensus on initial screening and follow-up of asymptomatic SDHx mutation carriers, submitted for publication, 2020
- Heumann P H, Young W F and Eng C, Pheochromocytoma and Paraganglioma, N Engl J Med 381;6, Aug 2019
- Plouin P F et al, European Society of Endocrinology Clinical Practice Guideline for long-term follow-up of patients operated on for a Phaeochromocytoma or a Paraganglioma, European Journal of Endocrinology, 2016
- Wong M Y et al, Clinical Practice Guidance: Surveillance for Phaeochromocytoma and paraganglioma in paediatric succinate dehydrogenase gene mutation carriers, Clinical Endocrinology, 2019;90:499-505
- Williams M D, Paragangliomas of the Head and Neck: and Overview from Diagnosis to Genetics, Head and Neck Pathol (2017) 11:278–287
- Relevant national and international consensus guidelines as they become available
What is our editorial process?
Our medical information is written by an expert patient in order that it is easy-to-understand for a lay audience, and are amended and then approved by the Medical Advisory Team before publication.
In some instances, one or more specialist authors and sometimes other patients are asked to help produce resources. These resources also require authorisation by the Medical Advisory Team before publication.
When is information updated?
Information resources may be updated when a relevant new national or international consensus guideline is published.
Webpages are reviewed on an annual basis to check for accuracy and necessary updates.
Printed resources are generally updated and reprinted every 3 years, although reprinting may vary according to funding constraints.