title: Taking Control of Castleman Disease: Leveraging Precision Medicine Technologies to Accelerate Rare Disease Research.
abstract: Castleman disease (CD) is a rare and heterogeneous disorder characterized by lymphadenopathy that may occur in a single lymph node (unicentric) or multiple lymph nodes (multicentric), the latter typically occurring secondary to excessive proinflammatory hypercytokinemia. While a cohort of multicentric Castleman disease (MCD) cases are caused by Human Herpes Virus-8 (HHV-8), the etiology of HHV-8 negative, idiopathic MCD (iMCD), remains unknown. Breakthroughs in "omics" technologies that have facilitated the development of precision medicine hold promise for elucidating disease pathogenesis and identifying novel therapies for iMCD. However, in order to leverage precision medicine approaches in rare diseases like CD, stakeholders need to overcome several challenges. To address these challenges, the Castleman Disease Collaborative Network (CDCN) was founded in 2012. In the past 3 years, the CDCN has worked to transform the understanding of the pathogenesis of CD, funded and initiated genomics and proteomics research, and united international experts in a collaborative effort to accelerate progress for CD patients. The CDCN's collaborative structure leverages the tools of precision medicine and serves as a model for both scientific discovery and advancing patient care.
authors.affiliation: Department of Medicine, NYU Langone Medical Center, New York, New York ; Castleman Disease Collaborative Network, Philadelphia, Pennsylvania.
authors.forename: Samantha Kass
authors.initials: SK
authors.lastname: Newman
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; School of Medicine, Meharry Medical College, Nashville, Tennessee.
authors.forename: Raj K
authors.initials: RK
authors.lastname: Jayanthan
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania.
authors.forename: Grant W
authors.initials: GW
authors.lastname: Mitchell
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Jossie A
authors.initials: JA
authors.lastname: Carreras Tartak
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; School of Medicine, Stony Brook University, Stony Brook, New York.
authors.forename: Michael P
authors.initials: MP
authors.lastname: Croglio
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Alexander
authors.initials: A
authors.lastname: Suarez
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania.
authors.forename: Amy Y
authors.initials: AY
authors.lastname: Liu
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Beatrice M
authors.initials: BM
authors.lastname: Razzo
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: Enny
authors.initials: E
authors.lastname: Oyeniran
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; Department of Medical Oncology, Dana-Farber Cancer Institute, Harvard Medical School, Boston, Massachusetts.
authors.forename: Jason R
authors.initials: JR
authors.lastname: Ruth
authors.affiliation: Castleman Disease Collaborative Network, Philadelphia, Pennsylvania ; Division of Hematology/Oncology, Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania.
authors.forename: David C
authors.initials: DC
authors.lastname: Fajgenbaum
mesh_terms: D035843:Biomedical Research / Q000379:methods*; D005871:Castleman Disease / Q000175:diagnosis* / Q000209:etiology / Q000628:therapy; D003299:Cooperative Behavior; D006801:Humans; D057285:Precision Medicine / Q000379:methods*; D035583:Rare Diseases / Q000175:diagnosis / Q000209:etiology / Q000628:therapy; D012106:Research
keywords: Castleman disease; Interleukin-6; genomics; lymphoproliferative disorder; orphan disease; precision medicine; rare disease