Matthew Collin (Newcastle University, Newcastle upon Tyne, UK)
Eli Diamond, MD (Memorial Sloan Kettering Cancer Center, New York, NY US)
The 2014 grant was awarded to principal investigators Eli Diamond, MD from Memorial Sloan-Kettering Cancer Center in New York, and Matthew Collin from Newcastle University in the UK, for the “Design and Creation of a Global Registry Database for Erdheim-Chester Disease”. The patient registry will be a collection of standardized information about the ECD group of patients to evaluate specified outcomes defined by this particular disease. The data will serve as a scientific, clinical purpose. This is expected to be a two (2) year effort with a budget of $316,000 being granted from the ECD Global Alliance.
Amount: 316,000 USD
Interim Report
The ECD Patient Registry has been broadened since it was first developed. It now encompasses additional histiocytic disorders. Numerous papers have been published based on the data learned from this study to include, but not limited to:
- Ankush Bhatia, Vaios Hatzoglou, Gary Ulaner, Raajit Rampal, David M Hyman, Omar Abdel-Wahab, Benjamin H Durham, Ahmet Dogan, Neval Ozkaya, Mariko Yabe, Kseniya Petrova-Drus, Katherine S Panageas, Anne Reiner, Marc Rosenblum, Eli L Diamond, Neurologic and oncologic features of Erdheim–Chester disease: a 30-patient series, Neuro-Oncology, Volume 22, Issue 7, July 2020, Pages 979–992, https://doi.org/10.1093/neuonc/noaa008
- Reiner AS, Bossert D, Buthorn JJ, Sigler AM, Gonen S, Fournier D, Brewer K, Corkran J, Goyal G, Allen CE, McClain KL, Atkinson TM, Lynch KA, Mao JJ, Panageas KS, Diamond EL. Patient-reported fatigue and pain in Erdheim-Chester disease: a registry-based, mixed methods study. Haematologica. 2023 Jun 1;108(6):1685-1690. doi: 10.3324/haematol.2022.282287. PMID: 36546452; PMCID: PMC10230438.
- Reiner AS, Applebaum AJ, Bossert D, Buthorn JJ, Sigler AM, Fournier D, Brewer K, Atkinson TM, Lynch KA, Gilliland J, Mao JJ, Panageas KS, Diamond EL. Dyadic communication in rare cancer: a registry-based study of patients with Erdheim-Chester disease and their caregivers. Blood Adv. 2023 Oct 10;7(19):5904-5910. doi: 10.1182/bloodadvances.2023010827. PMID: 37540824; PMCID: PMC10558707.
- Kirchner J, Hatzoglou V, Buthorn JB, Bossert D, Sigler AM, Reiner AS, Ulaner GA, Diamond EL. 18F-FDG PET/CT versus anatomic imaging for evaluating disease extent and clinical trial eligibility in Erdheim-Chester disease: results from 50 patients in a registry study. Eur J Nucl Med Mol Imaging. 2021 Apr;48(4):1154-1165. doi: 10.1007/s00259-020-05047-8. Epub 2020 Oct 15. PMID: 33057928; PMCID: PMC8041681.
- Riancho JA, Hernández JL, González-Vela C, López-Sundh AE, González-Lopez MA, Gomez de la Fuente F, Quirce R, Diamond EL. Erdheim-Chester Disease Due to a Novel Internal Duplication of NRAS: Response to Targeted Therapy with Cobimetinib. Int J Mol Sci. 2023 Oct 23;24(20):15467. doi: 10.3390/ijms242015467. PMID: 37895147; PMCID: PMC10606995.