Dit is de officiële site van Stichting Bijniernetwerk Nederland D.A.N. (Dutch Adrenal Network), een non-profit organisatie van zorgprofessionals (endocrinologen, chirurgen, oncologen, radiologen, nucleair geneeskundigen, klinisch chemici) en onderzoekers uit de basale wetenschappen die zich bezig houden met onderzoek naar bijnierziekten in de breedste zin van het woord.

Doelstelling

Doelstellingen van de stichting zijn het verwerven van fondsen en het hiermee stimuleren van klinisch en fundamenteel wetenschappelijk onderzoek in Nederland dat zich richt op de bijnier en haar hormonen, alsmede het verrichten van al hetgeen dat met het vorenstaande verband houdt of daartoe bevorderlijk kan zijn. De focus ligt op bijnierpathologie relevant voor de klinische praktijk, met name bijnierschorscarcinoom, feochromocytoom/paraganglioom, syndroom van Cushing, primair hyperaldosteronisme, incidentaloom en bijnierschorsinsufficiëntie. De stichting tracht haar doelen te bereiken door:

• het bevorderen en faciliteren van samenwerking op het gebied van wetenschappelijk onderzoek van onderzoeksgroepen in het bijnierveld, inclusief het organiseren van bijeenkomsten.
• het verkrijgen van subsidies en het leggen van contacten met potentiële partners en het sluiten van sponsorovereenkomsten.
• samenwerking met de Nederlandse Vereniging voor Endocrinologie en met BijnierNET, alsmede patiëntenorganisaties de Nederlandse Vereniging voor Addison en Cushing patiënten, en de Nederlandse Vereniging voor Patiënten met Paragangliomen. Daarnaast is er afstemming en samenwerking met de “European Network for the Study of Adrenal Tumors”.
• het organiseren van een jaarlijks (internationaal) Bijniersymposium.
• het toekennen van een jaarlijkse Bijnierprijs aan een persoon of groep die een bijzondere bijdrage aan het Nederlandse bijnieronderzoek heeft geleverd, waarbij de geldprijs aangewend dient te worden voor verder bijnier gerelateerd onderzoek.
• het toekennen van reisbeurzen aan studenten of promovendi voor laboratorium- of congresbezoek verband houdend met bijnieronderzoek.

Bestuur

Annual Meeting

The Dutch Adrenal Network organizes an annual symposium. National and international experts will highlight important recent developments in basic and clinical adrenal research.

Research

Radboud University Medical Centre Nijmegen

The Radboud University Medical Centre Nijmegen has a longstanding tradition in adrenal patient care and research. The principal topics of adrenal research in the departments of adult and pediatric endocrinology / vascular medicine are pheochromocytoma/paraganglioma, primary aldosteronism, congenital adrenal hyperplasia and adrenal surgery. The scientific program includes both clinical and translational studies and is tightly linked to the Radboudumc Center of Expertise Adrenal disorders and the post-academic course Radboudumc Adrenal Masterclass.

The overall goal of our studies is to improve the diagnosis, treatment and quality of life of patients with adrenal diseases. Studies on pheochromocytoma/paraganglioma are focused on functional imaging, in particular tumor characterization by ‘radiomics’ and treatment response monitoring; biomarker discovery (‘metabolomics’); tumor screening strategy in hereditary syndromes; and experimental treatment in zebrafish tumor models. Projects on primary aldosteronism particularly address diagnostic tools for lateralization; steroid profiling and metabolomics; and disease specific quality of life. Regarding congenital adrenal hyperplasia research themes include long term effects of ACTH and steroid precursors; and optimal timing / dosing of steroid treatment. The adrenal surgery branch of the department of urology focuses on innovations and long term complications of minimally invasive adrenalectomy.

Principal investigators

Prof. dr. Henri Timmers
Dr. Jaap Deinum
Prof. dr. Hedi Claahsen
Dr. Hans Langenhuijsen
Dr. Nike Stikkelbroeck
Dr. Margo Dona

Key publications

1. Van Berkel A, Vriens D, Visser EP, Janssen MJR, Gotthardt M, Hermus ARMM, Geus-Oei LF, Timmers HJLM. Metabolic Subtyping of Pheochromocytoma and Paraganglioma by 18F-FDG Pharmacokinetics Using Dynamic PET/CT Scanning. J Nucl Med. 2019;60(6):745-751
2. Dona M, Waaijers S, Richter S, Eisenhofer G, Korving J, Kamel SM, Bakkers J, Rapizzi E, Rodenburg RJ, Zethof J, Gorissen M, Flik G, Deen PMT, Timmers HJLM. Loss of sdhb in zebrafish larvae recapitulates human paraganglioma characteristics. Endocr Relat Cancer. 2021;28(1):65-77
3. Dekkers T, Prejbisz A, Kool LJS, Groenewoud HJMM, Velema M, Spiering W, Kołodziejczyk-Kruk S, Arntz M, Kądziela J, Langenhuijsen JF, Kerstens MN, van den Meiracker AH, van den Born BJ, Sweep FCGJ, Hermus ARMM, Januszewicz A, Ligthart-Naber AF, Makai P, van der Wilt GJ, Lenders JWM, Deinum J; SPARTACUS Investigators. Adrenal vein sampling versus CT scan to determine treatment in primary aldosteronism: an outcome-based randomised diagnostic trial. Lancet Diabetes Endocrinol. 2016 Sep;4(9):739-746
4. Velema M, Dekkers T, Hermus A, Timmers H, Lenders J, Groenewoud H, Schultze Kool L, Langenhuijsen J, Prejbisz A, van der Wilt GJ, Deinum J; SPARTACUS investigators. Quality of Life in Primary Aldosteronism: A Comparative Effectiveness Study of Adrenalectomy and Medical Treatment. J Clin Endocrinol Metab. 2018 Jan 1;103(1):16-24
5. Engels M, Pijnenburg-Kleizen KJ, Utari A, Faradz SMH, Oude-Alink S, van Herwaarden AE, Span PN, Sweep FC, Claahsen-van der Grinten HL. Glucocorticoid Activity of Adrenal Steroid Precursors in Untreated Patients With Congenital Adrenal Hyperplasia. J Clin Endocrinol Metab. 2019;104(11):5065-5072

Erasmus Medical Center Rotterdam

In Erasmus Medical Center the Academic Center of Adrenal and Neuroendocrine Tumors provides patient care, education and research on the full spectrum of adrenal disorders. Patient care is performed with a multidisciplinary team and state of the art diagnostic tools are available like adrenal vein sampling and steroid hormone measurement with lc/ms. The research lines involve both clinical and translational studies. In the past years a large biobank has been built up with storage of blood urine and adrenal tissue of patients with adrenal tumors. The center has a leading role in studies on medical treatment of Cushing’s syndrome. A worldwide unique property of the Laboratory of Neuroendocrinology is that adrenal tumor tissue of each operated patient is cultured on a routine basis. As such, sensitivity for medical therapy can be assessed as well as screening for new targets for medical therapy. In this respect important in vitro studies have been performed with new steroidogenesis inhibitors and drugs to treat adrenal carcinoma. This translational research should ultimately lead to tailor-made medical therapy for each patient.

Principal investigators

Dr. Richard Feelders
Prof. dr. Leo Hofland
Dr. Tessa van Ginhoven
Dr. Gaston Franssen
Dr. Loes van Velthuysen
Dr. Lindsey Oudijk
Dr. Sjoerd van de Berg
Dr. Jori Versmissen
Dr. Rogier Oldenburg

Key publications

1. Cushing’s syndrome. Lacroix A, Feelders RA, Stratakis CA, Nieman LK. Lancet 2015
2. Future directions in the diagnosis and medical treatment of adrenocortical carcinoma. Creemers SG, Hofland LJ, Korpershoek E, Franssen GJ, van Kemenade FJ, de Herder WW, Feelders RA Endocr Relat Cancer 2016
3. Identification of mutations in Cell-free Circulating Tumor DNA in Adrenocortical Carcinoma. Creemers SG, Korpershoek E, Atmodimedjo PN, Dinjens WNM, van Koetsveld PM, Feelders RA, Hofland LJ. J Clin Endocrinol Metab 2017
4. Advances in the medical treatment of Cushing’s syndrome. Feelders RA, Newell-Price J, Pivonello R, Nieman LK, Hofland LJ, Lacroix A. Lancet Diabetes Endocrinol. 2018
5. Treatment of paragangliomas and pheochromocytomas with peptide receptor radionuclide therapy using 177Lu-DOTATATE. Zandee WT, Feelders RA, Smit Duijzentkunst DA, Hofland J, Metselaar RM, Oldenburg RA,  van Linge A, Kam BLR, Teunissen JJM, Korpershoek E, Hendriks JM, Abusaris H, Slagter C, Franssen GJH, Brabander T, de Herder WW. Eur J Endocrinol. 2019

University Medical Center Groningen

The UMCG Expertise Center for Adrenal Disorders is part of the University Medical Center Groningen and is one of the Dutch centers of expertise for rare adrenal diseases. The general aim of the research projects conducted by this center is to alleviate the burden of adrenal diseases through improvement of both diagnostic and therapeutic strategies. The center utilizes state-of-the-art laboratory and imaging techniques and offers a high level of medical and surgical expertise. The scientific focus is mainly directed at pheochromocytoma/paraganglioma  (PPGL), adrenal incidentalomas and adrenal insufficiency. In particular, studies on PPGL are related to biochemical diagnosis (e.g. mass spectrometric quantification of metanephrines in biological matrices such as saliva, plasma and urine, multitargeted simultaneous quantification of biogenic amines precursor and metabolites with LC-MS/MS), imaging techniques (e.g. ¹⁸F-DOPA-PET/CT, CT) and optimization of perioperative management. Studies on adrenal incidentalomas aim to enhance a cost-effective analysis by application of urinary steroid profiling and radiomics, whereas studies on adrenal insufficiency evaluate current treatment strategies (e.g. relationship with cognitive function, validation Dutch version AddiQoL) and seek to develop novel hydrocortisone delivery systems (e.g. delayed hydrocortisone tablet, hydrocortisone inhalation). Furthermore, the UMCG Expertise Center for Adrenal Disorders participates as co-investigator in several studies on primary aldosteronism and adrenocortical carcinoma.

Principal investigators

Dr. Michiel Kerstens
Prof. dr. Thera Links
Dr. Wouter Zandee
Dr. André van Beek
Prof. dr. Schelto Kruijff
Prof. dr. Ido Kema
Dr. Adrienne Brouwers
Dr. Annika Berends

Key publications

1. Buitenwerf E, Osinga TE, Timmers HJLM, Lenders JWM, Feelders RA, Eekhoff EMW, Haak HR, Corssmit EPM, Bisschop PHLT, Valk GD, Veldman RG, Dullaart RPF, Links TP, Voogd MF, Wietasch GJKG, Kerstens MN. Efficacy of α-Blockers on Hemodynamic Control during Pheochromocytoma Resection: A Randomized Controlled Trial. J Clin Endocrinol Metab. 2020;105:2381-91.
2. van Faassen M, Bischoff R, Eijkelenkamp K, de Jong WHA, van der Ley CP, Kema IP. In Matrix Derivatization Combined with LC-MS/MS Results in Ultrasensitive Quantification of Plasma Free Metanephrines and Catecholamines. Anal Chem. 2020;92:9072-9078.
3. Berends AMA, Eisenhofer G, Fishbein L, Horst-Schrivers ANAVD, Kema IP, Links TP, Lenders JWM, Kerstens MN. Intricacies of the Molecular Machinery of Catecholamine Biosynthesis and Secretion by Chromaffin Cells of the Normal Adrenal Medulla and in Pheochromocytoma and Paraganglioma. Cancers 2019; 11(8):1121.
5. Noordzij W, Glaudemans AWJM, Schaafsma M, van der Horst-Schrivers ANA, Slart RHJA, van Beek AP, Kerstens MN. Adrenal tracer uptake by ¹⁸F-FDOPA PET/CT in patients with pheochromocytoma and controls. Eur J Nucl Med Mol Imaging. 2019;46:1560-1566.
6. Vrielink OM, Engelsman AF, Hemmer PHJ, de Vries J, Vorselaars WMCM, Vriens MR, Karakatsanis A, Hellman P, Sywak MS, van Leeuwen BL, El Moumni M, Kruijff S. Multicentre study evaluating the surgical learning curve for posterior retroperitoneoscopic adrenalectomy. Br J Surg . 2018;105:544-551.
7. Werumeus Buning J, Brummelman P, Koerts J, Dullaart RPF, van den Berg G, van der Klauw MM, Tucha O, Wolffenbuttel BHR, van Beek AP. The effects of two different doses of hydrocortisone on cognition in patients with secondary adrenal insufficiency-results from a randomized controlled trial. Psychoneuroendocrinology. 2015;55:36-47.

Máxima MC Eindhoven/Veldhoven

Máxima MC, Center for Adrenal Tumors has a longstanding expertise in adrenocortical carcinoma. The center functions as center for adrenal tumors for the south of the Netherlands and as tertiary reference center for adrenocortical carcinoma for the rest of the Netherlands. Clinical and epidemiological studies are conducted from Máxima MC for Dutch Adrenal Network (D.A.N.). Focus on what matters most to the patients is part of the current clinical research. Collaboration in D.A.N. and with the European Network for the Study of Adrenal Tumors (ENS@T) in clinical and translational studies resulted in several important publications. European guidelines for the diagnosis and treatment of adrenocortical carcinoma and pheochromocytoma are co-authored by our center.

Principal investigators

Prof. dr. Harm Haak
Dr. Pleun Wouters – van Poppel
Dr. Wouter Dercksen
Rebecca Steenaard MSc
Dr. Rudi Roumen
Dr. Wouter Leclercq
Dr. Gerrit Slooter

Key publications

1. Development and internal validation of a multivariable prediction model for adrenocortical carcinoma specific mortality. Madeleine H. T. Ettaieb, Sander M. J. van Kuijk, Annelies de Wit-Pastoors, Richard A. Feelders, Eleonora P. M. Corssmit, Elisabeth M. W. Eekhoff, Paul van der Valk, Henri J. L. M. Timmers, Michiel N. Kerstens, Heinz-Josef Klümpen, Rachel S. van Leeuwaarde, Bas Havekes, Harm R. Haak. Cancers (Basel) 2020 Sep; 12(9)
2. Patient and partner perspectives on health related quality of life in adrenocortical carcinoma. Rebecca V Steenaard, Marjolein N T Kremers, Laura A Michon, Myrte Zijlstra, Harm R Haak. J Endocr Soc. 2020 May 1
3. Adrenocortical carcinomas and malignant phaechromocytomas: ESMO-EURACAN Clinical Practice Guidelines for diagnosis, treatment and follow-up. Fassnacht M, Assie G, Baudin E, Eisenhofer G, Fouchardiere C, Haak HR, de Krijger R, Porpiglia F, Terzolo M, Berruti A; ESMO Guidelines Committee.Fassnacht M, et al. Ann Oncol. 2020 Aug 24
4. European Society of Endocrinology Clinical Practice Guidelines on the Management of Adrenocortical Carcinoma in Adults, in collaboration with the European Network for the study of Adrenal Tumors. Fassnacht M, Dekkers O, Else T, Baudin E, Berruti A, de Krijger RR, Haak HR, Mihai R, Assie G, Terzolo M. Eur J Endocrinol. 2018 Oct 1
5. Adrenocortical carcinoma: A population-based study on incidence and survival in the Netherlands since 1993. Kerkhofs TMA, Verhoeven RHA, Van der Zwan JM, Dieleman J, Kerstens MN, Links TP, Van de Poll-Franse LV, Haak HR. Eur J Cancer 2013 Apr 2
6. Combination Chemotherapy in Advanced Adrenocortical Carcinoma. Martin Fassnacht, Massimo Terzolo, Bruno Allolio, Eric Baudin, Harm Haak, Alfredo Berruti, Staffan Welin, Carmen Schade-Brittinger, André Lacroix, Barbara Jarzab, Halfdan Sorbye, David J. Torpy, Vincenz Stepan, David Schteingart, Wiebke Arlt, , Matthias Kroiss, Sophie Leboulleux, Paola Sperone, Anders Sundin, Ilse Hermsen, Stefanie Hahner, Holger S. Willenberg, Antoine Tabarin, Marcus Quinkler, Christelle de la Fouchardière, Martin Schlumberger, Franco Mantero, Dirk Weismann, Felix Beuschlein, Hans Gelderblom, Hanneke Wilmink, Monica Sender, Maureen Edgerly, Werner Kenn, Tito Fojo, Hans-Helge Mueller, Britt Skogseid, for the FIRM-ACT study group N Eng J Med 2012; 366: 2189-2197

Amsterdam UMC

Amsterdam UMC is the major care provider for patients with adrenal disorders in the greater Amsterdam area. The Amsterdam Center for Endocrine and Neuroendocrine Tumors (ACcENT) is the multidisciplinary collaboration for the treatment of endocrine tumors, including adrenal tumors. Our scientific areas of interest are adrenal surgery, pre-operative management in pheochromocytoma and innovation of systemic treatment of adrenocortical carcinoma. In 2021, ACcENT has been recognized as an NFU center of expertise for rare adrenal diseases.

Principle investigators

Prof. dr. Els Nieveen van Dijkum
Prof. dr. Peter Bisschop
Dr. Willemien Menke-van der Houven van Oordt
Dr. Anton Engelsman
Dr. Koen Dreijerink
Dr. Marelise Eekhoff

Key publications

1. Surgery for adrenocortical carcinoma in The Netherlands: analysis of the national cancer registry data. Kerkhofs TM, Verhoeven RH, Bonjer HJ, van Dijkum EJ, Vriens MR, De Vries J, Van Eijck CH, Bonsing BA, Van de Poll-Franse LV, Haak HR; Dutch Adrenal Network. Eur J Endocrinol. 2013;169:83-9
2. Surgery in adrenocortical carcinoma: Importance of national cooperation and centralized surgery. Hermsen IG, Kerkhofs TM, den Butter G, Kievit J, van Eijck CH, Nieveen van Dijkum EJ, Haak HR; Dutch Adrenal Network. 2012;152:50-6.
3. Recurrence Rate of Sporadic Pheochromocytomas After Curative Adrenalectomy: A Systematic Review and Meta-analysis. Holscher I, van den Berg TJ, Dreijerink KMA, Engelsman AF, Nieveen van Dijkum EJM. J Clin Endocrinol Metab. 2021;106:588-597
4. Biochemically Silent Sympathetic Paraganglioma, Pheochromocytoma, or Metastatic Disease in SDHD Mutation Carriers. Dreijerink KMA, Rijken JA, Compaijen CJ, Timmers HJLM, van der Horst-Schrivers ANA, van Leeuwaarde RS, van Dam PS, Leemans CR, van Dam EWCM, Dickhoff C, Dommering CJ, de Graaf P, Zwezerijnen GJC, van der Valk P, Menke-Van der Houven van Oordt CW, Hensen EF, Corssmit EPM, Eekhoff EMW. J Clin Endocrinol Metab. 2019;104:5421-5426

Contact

U kunt contact opnemen met Stichting Bijniernetwerk Nederland D.A.N. (Dutch Adrenal Network) door een mail te sturen naar sbn@nve.nl.