About us
The Dutch government has acknowledged Amsterdam UMC, location VUmc as a FOP expertise center since 2015. This has been an initiative of dr. EMW Eekhoff, affiliated to the department of endocrinology. Many different specialists from different disciplines are part of our Amsterdam FOP-team.
Our team is represents its care and research in the European FOP consortium and in the near future also in the Rare Bone Disease ERN-Bond.
Research
Several research groups are collaborating to unravel this very rare, extremely disabling disease with one main goal: to develop a treatment option. Research is performed mainly in the USA, UK, Japan, Italy, France and the Netherlands. Researchers contact each other and patient organizations on a regular basis, to discuss their research. The last few years compounds have been discovered which might contribute to the treatment of FOP.
In 2017 Amsterdam UMC, location VUmc discovered an important imaging modality which made it possible to visualize a flare-up for the first time. With this so called [18F]NaF PET/CT-scan an image can be obtained to show the activity of FOP, even in a very early stage of an ossifying flare-up before the new extraskeletal bone has been formed. Also, this method can be used for follow-up of the extraskeletal bone that has already been formed and it can monitor the effects of potential medicines. The scan is, unfortunately, not yet used broadly. National as well as International patients are already visiting and are welcome to visit Amsterdam UMC, location VUmc for this special diagnostic method.
At Amsterdam UMC, location VUmc the FOP research team is using blood analysis, very small skin biopsies and teeth (when it comes available) to assess the activity of the disease, but also to find alternative ways to understand and treat the disease and to try to predict the effect of a potential medicine before administration. Also, new potential medicines are tested which are proposed to stop or slow down progression of disease. The large genetic laboratory is also involved in rare diseases research, especially to assess the mutation responsible for FOP and related bone diseases.
ZonMw, the Dutch FOP society and IFOPA give financial support for research focused on FOP. However, this is often barely enough to start with a study. Research is very expensive, especially in rare diseases it is hard to raise enough money to fund studies. Researchers need and would be extremely thankful for your support! We work closely with the Dutch FOP patient society "FOP stichting Nederland" (www.fopstichting.nl). For any donations we would like to ask you to donate to the Dutch FOP patient organization: Stichting Vrienden van FOP (translation: Friends of FOP) on account number: NL94 RABO 032 081 147. Donations made for research are often tax-deductible.
Clinical trials
In 2018 two clinical trials will start to test new medicine for its effectiveness in FOP. Please see https://clinicaltrialsregister.eu and https://clinicaltrials.gov.
The two active clinical trials are:
- Palovarotene (MOVE study ), in collaboration with Clementia Pharmaceuticals.
- REGN2477 (Lumina-1 study) , in collaboration with Regeneron Pharmaceuticals.
We enable our patients from The Netherlands and abroad to participate in every clinical trial that will be available now or in the future. We are collaborating with researchers and pharmaceutical companies to make sure that all studies will be accessible for our patients. REGN2477 will start the 16h of April 2019, the MOVE study is expected shortly after.
Publications
Clinical Utility Gene Card for: Fibrodysplasia ossi?cans progressiva.Nathalie Bravenboer, Dimitra Micha, James T Trif?t, Alex N Bullock, Roberto Ravazollo, Renata Bocciardi, Maja di Rocco, J Coen Netelenbos, Peter Ten Dijke, Gonzalo Sánchez-Duffhues, Fred S Kaplan, Eileen M Shore, Robert J Pignolo, Petra Seemann, Francesc Ventura, Genevieve Beaujat, Elizabeth M W Eekhoff and Gerard Pals. Eur J Hum Genet. 2015 Oct;23(10). doi: 10.1038/ejhg.2014.274 https://bit.ly/2Hf7d9Z
Inhibition of TGF? signaling decreases osteogenic differentiation of fibrodysplasia ossificans progressiva fibroblasts in a novel in vitro model of the disease. DImitra Micha, Elise Voermans , Marelise E.W.Eekhoff, Huib W.van Essen, Behrouz Zandieh-Doulabi Coen Netelenbos, Thomas Rustemeyer, E.A. Sistermans, Gerard Pals, Nathalie Bravenboer. Bone Volume 84, March 2016, Pages 169-180. http://bit.ly/2iOwu06
Flare-Up After Maxillofacial Surgery in a Patient With Fibrodysplasia Ossificans Progressiva: An [18F]-NaF PET/CT Study and a Systematic Review. E Marelise W Eekhoff, J Coen Netelenbos, Pim de Graaf, Max Hoebink, Nathalie Bravenboer, Dimitra Micha, Gerard Pals3 Teun J de Vries, Adriaan A Lammertsma, Pieter GHM Raijmakers, and Robert JJ van Es. JBMR Plus, 27 May 2017 online2 http://onlinelibrary.wiley.com/doi/10.1002/jbm4.10008/epdf
Periodontal ligament fibroblasts as a cell model to study osteogenesis and osteoclastogenesis in fibrodysplasia ossificans progressiva. Teun J. de Vries, Ton Schoenmaker, Dimitra Micha, Jolanda Hogervorst, Siham Bouskla, Tim Forouzanfar, Gerard Pals, Coen Netelenbos, E. Marelise W. Eekhoff, Nathalie Bravenboer Bone. 2017 July 10 online http://bit.ly/2z0L5hI
[18F]NaF PET/CT scan as an early marker of heterotopic ossification in fibrodysplasia ossificans progressiva. E. Marelise W. Eekhoff, Esmée Botman, J. Coen Netelenbos, Pim de Graaf, Nathalie Bravenboer, Dimitra Micha, Gerard Pals, Teun J. de Vries, T. Ton Schoenmaker, Max Hoebink, Adriaan Lammertsma, Pieter Raijmakers. Bone. 2017 Aug 18 online http://bit.ly/2kUx7cC
Patient Care
Amsterdam UMC, location VUmc is the only FOP expertise center of the Netherlands. Patients are checked yearly by their specialist (dr. Marelise Eekhoff). Important organ functions will be checked during this visit. A [18F]NaF PET/CT-scan may be performed to evaluate the activity of disease, and furthermore extensive bloodtests, lungfunction tests and an echography of the heart may be performed. The extend of this care has been established in collaboration with the Dutch FOP society and the patients themselves.
Team
Dr. EMW Eekhoff, internist-endocrinologist;
dr. Micha Dimitra and prof. dr. Gerard Pal, clinical genetics;
dr. Nathalie Bravenboer, clinical chemistry;
dr. Pieter Koolwijk, Physiologist
prof. dr. Coen Netelenbos, drs. Esmée Botman, student Max Hoebink, endocrinology;
dr. Pim de Graaf, dr. Pieter Raijmakers, drs. Bernd Teunissen en prof. dr. Adriaan Lammertsma, prof. dr. Guus van Dongen, Department of Radiology and Nuclear Medicine;
prof. dr. Tim Forouzanfar, drs. Marjolein Gilijamse, oral and maxillofacial surgery;
dr. Jan Maerten Smit, plastic surgery;
dr. Teun J. de Vries en Ton Schoenmaker, parodontology ACTA;
dr. Lothar Schwarte en drs. Wouter Lubbers, anesthesiology;
Prof. dr. Thomas Rustemeyer, dermatology and immunology,
drs. Thierry Sampimon, dermatology;
dr. Ir. Cas Smits, clinic physicist-audiologist;
dr. Arend Bökenkamp, pediatrician
dr. Anco Boonstra, pulmonologist;
dr. Jakko van Nieuwenhuijzen, urologist;
dr. Louise Sabelis, rehabilitation specialist;
dr. Guus Eeckhout, psychiatrist;
dr. Patrick Thoral, intensivist;
dr Marieke Visser, neurologist;
dr. Chris Dickhoff, surgeon;
Ivette Sprengers, ER nurse;
dr. Otto Kamp, cardiologist;
dr A. Bokekamp, pediatrician
dr. Robert van Es, oral and maxillofacial surgery, UMC Utrecht
Contact
For any acute medical questions: please reach out to drs. Esmée Botman, doctor and researcher, EMW Eekhoff MD PhD, endocrinologist and Prof. dr. JC Netelenbos, endocrinologist. You can call Amsterdam UMC, location VUmc (+31(0)20-4444444) and be put through to one of the names mentioned above.
For general questions you can send an email to fop.amsterdam@vumc.nl. Drs. Esmée Botman, Dr. EMW Eekhoff or Prof. dr. JC Netelenbos will respond as soon as possible.