International Registry for Patients With Castleman Disease
NCT ID: NCT02817997
Last Updated: 2025-11-04
Study Results
Results pending
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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Recruitment Status
RECRUITING
Total Enrollment
1000 participants
Study Classification
OBSERVATIONAL
Study Start Date
2016-10-31
Study Completion Date
2027-09-30
Brief Summary
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The purpose of this study is to collect clinical, laboratory, and patient survey data from patients with Castleman disease to improve understanding, diagnosis, and treatment of the disease. Funding source - FDA OOPD.
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Detailed Description
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This project is supported by the Castleman Disease Collaborative Network.
Visit the CDCN website at http://www.cdcn.org/accelerate to sign up for the ACCELERATE registry!
The ACCELERATE patient registry will give patients and families the opportunity to contribute their medical data to improve understanding of Castleman Disease. The patient registry will obtain real-world demographic, clinical, laboratory, and patient reported outcomes, and treatment data from 1000 patients worldwide with Castleman Disease.
This registry will help to provide important data for future Castleman Disease research studies. The patient registry helps centralize information on this rare disease, and provides researchers a way to obtain data on Castleman Disease patients. The major objectives for the registry include:
1. Improve our understanding of the natural history (signs, symptoms, laboratory values, survival data, outcome predictors), pathogenesis, and treatment of Castleman disease by collecting a standardized set of demographic and longitudinal data from CD patients,
2. Build capacity for collaboration between patients, providers, researchers, and industry by collecting clinical data and tracking the location of all available tissue samples for future studies ("virtual biorepository"), and
3. Assemble \"real-world\" data related to burden of disease, treatments used, tolerability, and safety data.
Individuals affected by Castleman Disease and families of deceased patients are invited to join the registry.
Patients located anywhere in the United States of America (USA), Canada, or rest of world will be able to enroll themselves directly into the registry. Participants will enroll online and be asked to provide their electronic medical records to University of Pennsylvania researchers for data extraction. All patients will also be asked to complete questionnaires every three months about their symptoms, treatments, and experiences with Castleman Disease. Complete participant information will be stored in a secure database.
Researchers who are interested in studying Castleman Disease can also request access to registry datasets.
Visit the CDCN website at http://www.cdcn.org/accelerate to sign up for the ACCELERATE registry!
The ACCELERATE patient registry will give patients and families the opportunity to contribute their medical data to improve understanding of Castleman Disease. The patient registry will obtain real-world demographic, clinical, laboratory, and patient reported outcomes, and treatment data from 1000 patients worldwide with Castleman Disease.
This registry will help to provide important data for future Castleman Disease research studies. The patient registry helps centralize information on this rare disease, and provides researchers a way to obtain data on Castleman Disease patients. The major objectives for the registry include:
1. Improve our understanding of the natural history (signs, symptoms, laboratory values, survival data, outcome predictors), pathogenesis, and treatment of Castleman disease by collecting a standardized set of demographic and longitudinal data from CD patients,
2. Build capacity for collaboration between patients, providers, researchers, and industry by collecting clinical data and tracking the location of all available tissue samples for future studies ("virtual biorepository"), and
3. Assemble \"real-world\" data related to burden of disease, treatments used, tolerability, and safety data.
Individuals affected by Castleman Disease and families of deceased patients are invited to join the registry.
Patients located anywhere in the United States of America (USA), Canada, or rest of world will be able to enroll themselves directly into the registry. Participants will enroll online and be asked to provide their electronic medical records to University of Pennsylvania researchers for data extraction. All patients will also be asked to complete questionnaires every three months about their symptoms, treatments, and experiences with Castleman Disease. Complete participant information will be stored in a secure database.
Researchers who are interested in studying Castleman Disease can also request access to registry datasets.
Conditions
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Castleman Disease
Castleman's Disease
Giant Lymph Node Hyperplasia
Angiofollicular Lymph Hyperplasia
Angiofollicular Lymph Node Hyperplasia
Angiofollicular Lymphoid Hyperplasia
GLNH
Hyperplasia, Giant Lymph Node
Lymph Node Hyperplasia, Giant
Study Design
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Observational Model Type
COHORT
Study Time Perspective
OTHER
Eligibility Criteria
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Inclusion Criteria
* Person of any age
* Have a reference pathology report suggesting "Castleman disease" not limited to cutaneous involvement only that can be uploaded
* Be able to provide electronic informed consent, as per local regulations
* Deceased patients may also be enrolled when a reference pathology report suggesting "Castleman disease" can be supplied or when the ART is able to locate and upload such a pathology report.
* Have a reference pathology report suggesting "Castleman disease" not limited to cutaneous involvement only that can be uploaded
* Be able to provide electronic informed consent, as per local regulations
* Deceased patients may also be enrolled when a reference pathology report suggesting "Castleman disease" can be supplied or when the ART is able to locate and upload such a pathology report.
Eligible Sex
ALL
Accepts Healthy Volunteers
No
Sponsors
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EUSA Pharma, Inc.
INDUSTRY
Sponsor Role
collaborator
Castleman Disease Collaborative Network
OTHER
Sponsor Role
collaborator
University of Pennsylvania
OTHER
Sponsor Role
lead
Responsible Party
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Responsibility Role
SPONSOR
Principal Investigators
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David C Fajgenbaum, MD, MBA, MSc
Role: PRINCIPAL_INVESTIGATOR
University of Pennsylvania
Locations
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University of Pennsylvania
Philadelphia, Pennsylvania, United States
Site Status
RECRUITING
Countries
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United States
Central Contacts
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Facility Contacts
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References
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Fajgenbaum DC, van Rhee F, Nabel CS. HHV-8-negative, idiopathic multicentric Castleman disease: novel insights into biology, pathogenesis, and therapy. Blood. 2014 May 8;123(19):2924-33. doi: 10.1182/blood-2013-12-545087. Epub 2014 Mar 12.
Reference Type
BACKGROUND
Liu AY, Nabel CS, Finkelman BS, Ruth JR, Kurzrock R, van Rhee F, Krymskaya VP, Kelleher D, Rubenstein AH, Fajgenbaum DC. Idiopathic multicentric Castleman's disease: a systematic literature review. Lancet Haematol. 2016 Apr;3(4):e163-75. doi: 10.1016/S2352-3026(16)00006-5. Epub 2016 Mar 17.
Reference Type
BACKGROUND
Pai RL, Japp AS, Gonzalez M, Rasheed RF, Okumura M, Arenas D, Pierson SK, Powers V, Layman AAK, Kao C, Hakonarson H, van Rhee F, Betts MR, Kambayashi T, Fajgenbaum DC. Type I IFN response associated with mTOR activation in the TAFRO subtype of idiopathic multicentric Castleman disease. JCI Insight. 2020 May 7;5(9):e135031. doi: 10.1172/jci.insight.135031.
Reference Type
RESULT
Pierson SK, Khor JS, Ziglar J, Liu A, Floess K, NaPier E, Gorzewski AM, Tamakloe MA, Powers V, Akhter F, Haljasmaa E, Jayanthan R, Rubenstein A, Repasky M, Elenitoba-Johnson K, Ruth J, Jacobs B, Streetly M, Angenendt L, Patier JL, Ferrero S, Zinzani PL, Terriou L, Casper C, Jaffe E, Hoffmann C, Oksenhendler E, Fossa A, Srkalovic G, Chadburn A, Uldrick TS, Lim M, van Rhee F, Fajgenbaum DC. ACCELERATE: A Patient-Powered Natural History Study Design Enabling Clinical and Therapeutic Discoveries in a Rare Disorder. Cell Rep Med. 2020 Dec 22;1(9):100158. doi: 10.1016/j.xcrm.2020.100158. eCollection 2020 Dec 22.
Reference Type
RESULT
Pierson SK, Stonestrom AJ, Shilling D, Ruth J, Nabel CS, Singh A, Ren Y, Stone K, Li H, van Rhee F, Fajgenbaum DC. Plasma proteomics identifies a 'chemokine storm' in idiopathic multicentric Castleman disease. Am J Hematol. 2018 Jul;93(7):902-912. doi: 10.1002/ajh.25123. Epub 2018 May 16.
Reference Type
RESULT
Arenas DJ, Floess K, Kobrin D, Pai RL, Srkalovic MB, Tamakloe MA, Rasheed R, Ziglar J, Khor J, Parente SAT, Pierson SK, Martinez D, Wertheim GB, Kambayashi T, Baur J, Teachey DT, Fajgenbaum DC. Increased mTOR activation in idiopathic multicentric Castleman disease. Blood. 2020 May 7;135(19):1673-1684. doi: 10.1182/blood.2019002792.
Reference Type
RESULT
Fajgenbaum DC, Langan RA, Japp AS, Partridge HL, Pierson SK, Singh A, Arenas DJ, Ruth JR, Nabel CS, Stone K, Okumura M, Schwarer A, Jose FF, Hamerschlak N, Wertheim GB, Jordan MB, Cohen AD, Krymskaya V, Rubenstein A, Betts MR, Kambayashi T, van Rhee F, Uldrick TS. Identifying and targeting pathogenic PI3K/AKT/mTOR signaling in IL-6-blockade-refractory idiopathic multicentric Castleman disease. J Clin Invest. 2019 Aug 13;129(10):4451-4463. doi: 10.1172/JCI126091.
Reference Type
RESULT
van Rhee F, Oksenhendler E, Srkalovic G, Voorhees P, Lim M, Dispenzieri A, Ide M, Parente S, Schey S, Streetly M, Wong R, Wu D, Maillard I, Brandstadter J, Munshi N, Bowne W, Elenitoba-Johnson KS, Fossa A, Lechowicz MJ, Chandrakasan S, Pierson SK, Greenway A, Nasta S, Yoshizaki K, Kurzrock R, Uldrick TS, Casper C, Chadburn A, Fajgenbaum DC. International evidence-based consensus diagnostic and treatment guidelines for unicentric Castleman disease. Blood Adv. 2020 Dec 8;4(23):6039-6050. doi: 10.1182/bloodadvances.2020003334.
Reference Type
RESULT
Nishimura Y, Fajgenbaum DC, Pierson SK, Iwaki N, Nishikori A, Kawano M, Nakamura N, Izutsu K, Takeuchi K, Nishimura MF, Maeda Y, Otsuka F, Yoshizaki K, Oksenhendler E, van Rhee F, Sato Y. Validated international definition of the thrombocytopenia, anasarca, fever, reticulin fibrosis, renal insufficiency, and organomegaly clinical subtype (TAFRO) of idiopathic multicentric Castleman disease. Am J Hematol. 2021 Oct 1;96(10):1241-1252. doi: 10.1002/ajh.26292. Epub 2021 Jul 28.
Reference Type
RESULT
Pierson SK, Shenoy S, Oromendia AB, Gorzewski AM, Langan Pai RA, Nabel CS, Ruth JR, Parente SAT, Arenas DJ, Guilfoyle M, Reddy M, Weinblatt M, Shadick N, Bower M, Pria AD, Masaki Y, Katz L, Mezey J, Beineke P, Lee D, Tendler C, Kambayashi T, Fossa A, van Rhee F, Fajgenbaum DC. Discovery and validation of a novel subgroup and therapeutic target in idiopathic multicentric Castleman disease. Blood Adv. 2021 Sep 14;5(17):3445-3456. doi: 10.1182/bloodadvances.2020004016.
Reference Type
RESULT
Belyaeva E, Rubenstein A, Pierson SK, Dalldorf D, Frank D, Lim MS, Fajgenbaum DC. Bone marrow findings of idiopathic Multicentric Castleman disease: A histopathologic analysis and systematic literature review. Hematol Oncol. 2022 Apr;40(2):191-201. doi: 10.1002/hon.2969. Epub 2022 Feb 18.
Reference Type
RESULT
Phillips AD, Kakkis JJ, Tsao PY, Pierson SK, Fajgenbaum DC. Increased mTORC2 pathway activation in lymph nodes of iMCD-TAFRO. J Cell Mol Med. 2022 Jun;26(11):3147-3152. doi: 10.1111/jcmm.17251. Epub 2022 Apr 30.
Reference Type
RESULT
Koa B, Borja AJ, Aly M, Padmanabhan S, Tran J, Zhang V, Rojulpote C, Pierson SK, Tamakloe MA, Khor JS, Werner TJ, Fajgenbaum DC, Alavi A, Revheim ME. Emerging role of 18F-FDG PET/CT in Castleman disease: a review. Insights Imaging. 2021 Mar 11;12(1):35. doi: 10.1186/s13244-021-00963-1.
Reference Type
RESULT
Pierson SK, Lim MS, Srkalovic G, Brandstadter JD, Sarmiento Bustamante M, Shyamsundar S, Mango N, Lavery C, Austin B, Alapat D, Lechowicz MJ, Bagg A, Li H, Casper C, van Rhee F, Fajgenbaum DC. Treatment consistent with idiopathic multicentric Castleman disease guidelines is associated with improved outcomes. Blood Adv. 2023 Nov 14;7(21):6652-6664. doi: 10.1182/bloodadvances.2023010745.
Reference Type
RESULT
Pierson SK, Katz L, Williams R, Mumau M, Gonzalez M, Guzman S, Rubenstein A, Oromendia AB, Beineke P, Fossa A, van Rhee F, Fajgenbaum DC. CXCL13 is a predictive biomarker in idiopathic multicentric Castleman disease. Nat Commun. 2022 Nov 24;13(1):7236. doi: 10.1038/s41467-022-34873-7.
Reference Type
RESULT
Sarmiento Bustamante M, Shyamsundar S, Coren FR, Bagg A, Srkalovic G, Alapat D, van Rhee F, Lim MS, Lechowicz MJ, Brandstadter JD, Pierson SK, Fajgenbaum DC. Ongoing symptoms following complete surgical excision in unicentric Castleman disease. Am J Hematol. 2023 Nov;98(11):E334-E337. doi: 10.1002/ajh.27065. Epub 2023 Aug 28. No abstract available.
Reference Type
RESULT
Fajgenbaum DC, Pierson SK, Kanhai K, Bagg A, Alapat D, Lim MS, Lechowicz MJ, Srkalovic G, Uldrick TS, van Rhee F; ACCELERATE Registry Team. The disease course of Castleman disease patients with fatal outcomes in the ACCELERATE registry. Br J Haematol. 2022 Jul;198(2):307-316. doi: 10.1111/bjh.18214. Epub 2022 May 4.
Reference Type
RESULT
Mango NA, Pierson SK, Sarmiento Bustamante M, Brandstadter JD, van Rhee F, Fajgenbaum DC. Siltuximab administration results in spurious IL-6 elevation in peripheral blood. Am J Hematol. 2024 Jan;99(1):E15-E18. doi: 10.1002/ajh.27132. Epub 2023 Oct 23. No abstract available.
Reference Type
RESULT
Shyamsundar S, Pierson SK, Connolly CM, Teles M, Segev DL, Werbel WA, van Rhee F, Casper C, Brandstadter JD, Noy A, Fajgenbaum DC. Castleman disease patients report mild COVID-19 symptoms and mount a humoral response to SARS-CoV-2 vaccination. Blood Neoplasia. 2024 Mar;1(1):100002. doi: 10.1016/j.bneo.2024.100002. Epub 2024 Feb 15.
Reference Type
DERIVED
Rubenstein AI, Pierson SK, Shyamsundar S, Bustamante MS, Gonzalez MV, Milller ID, Brandstadter JD, Mumau MD, Fajgenbaum DC. Immune-mediated thrombocytopenia and IL-6-mediated thrombocytosis observed in idiopathic multicentric Castleman disease. Br J Haematol. 2024 Mar;204(3):921-930. doi: 10.1111/bjh.19279. Epub 2024 Jan 2.
Reference Type
DERIVED
Dispenzieri A, Fajgenbaum DC. Overview of Castleman disease. Blood. 2020 Apr 16;135(16):1353-1364. doi: 10.1182/blood.2019000931.
Reference Type
DERIVED
van Rhee F, Voorhees P, Dispenzieri A, Fossa A, Srkalovic G, Ide M, Munshi N, Schey S, Streetly M, Pierson SK, Partridge HL, Mukherjee S, Shilling D, Stone K, Greenway A, Ruth J, Lechowicz MJ, Chandrakasan S, Jayanthan R, Jaffe ES, Leitch H, Pemmaraju N, Chadburn A, Lim MS, Elenitoba-Johnson KS, Krymskaya V, Goodman A, Hoffmann C, Zinzani PL, Ferrero S, Terriou L, Sato Y, Simpson D, Wong R, Rossi JF, Nasta S, Yoshizaki K, Kurzrock R, Uldrick TS, Casper C, Oksenhendler E, Fajgenbaum DC. International, evidence-based consensus treatment guidelines for idiopathic multicentric Castleman disease. Blood. 2018 Nov 15;132(20):2115-2124. doi: 10.1182/blood-2018-07-862334. Epub 2018 Sep 4.
Reference Type
DERIVED
Related Links
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http://www.cdcn.org/accelerate
website includes information on Castleman Disease, the ACCELERATE Castleman Disease Registry, and related Castleman Disease links
Other Identifiers
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10055241
Identifier Type: -
Identifier Source: org_study_id
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