Where do we get our medical information from?
All educational information is vetted by our Medical Advisory Board (MAB) who provides insight, scientific and clinical direction, and expertise to the Pheo Para Alliance. The members of the MAB are recognized experts in pheochromocytoma and paraganglioma from leading academic and medical institutions around the world. Each of them devotes their time and expertise to improving the lives of people with pheo para.
Pheo Para Alliance also utilizes guidelines and relevant research as it is published. Below are some examples.
- Jacques W. M. Lenders, Quan-Yang Duh, Graeme Eisenhofer, Anne-Paule Gimenez-Roqueplo, Stefan K. G. Grebe, Mohammad Hassan Murad, Mitsuhide Naruse, Karel Pacak, William F. Young, Pheochromocytoma and Paraganglioma: An Endocrine Society Clinical Practice Guideline, The Journal of Clinical Endocrinology & Metabolism, Volume 99, Issue 6, 1 June 2014, Pages 1915–1942, https://doi.org/10.1210/jc.2014-1498
- National Comprehensive Cancer Network. Neuroendocrine and Adrenal Tumors Clinical Practice Guidelines (Version 1.2019). http://www.nccn.org/professionals/physician_gls/pdf/bone.pdf.
- PDQ® Adult Treatment Editorial Board. PDQ Pheochromocytoma and Paraganglioma Treatment. Bethesda, MD: National Cancer Institute. Updated 10/26/2019. https://www.cancer.gov/types/pheochromocytoma/hp/pheochromocytoma-treatment-pdq. Accessed 11/4/2019.
- Mayo Clinic. Patient Care & Health Information, Diseases & Conditions, Pheochromocytoma.
- National Center for Advancing Translational Sciences, Genetic & Rare Disease Information Center, Pheochromocytoma.
- Karel Pacak, David Taieb, ed. Pheochromocytoma and Paraganglioma. Basil, Switzerland: Cancers; 2019. Available at: https://www.mdpi.com/journal/cancers/special_issues/PHEO_PGL
How often is information updated?
Information resources are updated annually or, more frequently, when new national or international consensus guidelines are published.
Printed resources are generally updated and reprinted every 3 years, although reprinting may vary according to funding constraints.