Evidence map›Paper›PMID 36070610›Full record

ArticleLeukemia & lymphoma2022

Development of a distributed international patient data registry for hairy cell leukemia.

Leslie A Andritsos, Mirela Anghelina, Jasmine Neal, James S Blachly, Puneet Mathur, Omkar Lele, Claire Dearden, Sunil Iyengar, Matthew Cross, Clive S Zent and 33 more

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Leukemia & lymphoma, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
0.5field-weighted citation impact, top 35% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed, 3 citations in OpenAlex.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

43 authors at 20 institutions in 10 countries.

Leslie A AndritsosDivision of Hematology Oncology, University of New Mexico Comprehensive Cancer Center, Albuquerque, NM, USA.ORCID 0000-0003-0222-1766
Mirela AnghelinaDepartment of Biomedical Informatics, The Ohio State University, Columbus, OH, USA.
Jasmine NealDepartment of Internal Medicine, Division of Hematology, Comprehensive Cancer Center, The Ohio State University, Columbus, OH, USA.
James S BlachlyDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
Puneet MathurDepartment of Research Information Technology, College of Medicine, The Ohio State University, Columbus, OH, USA.
Omkar LeleDepartment of Biomedical Informatics, The Ohio State University, Columbus, OH, USA.
Claire DeardenThe Royal Marsden NHS Foundation Trust, London, UK.
Sunil IyengarThe Royal Marsden NHS Foundation Trust, London, UK.
Matthew CrossThe Royal Marsden NHS Foundation Trust, London, UK.
Clive S ZentJames P. Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY, USA.ORCID 0000-0001-6099-3313
Kerry A RogersDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
Narendranath EpperlaDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.ORCID 0000-0002-8216-3457
Gerard LozanskiDepartment of Pathology, The Ohio State University Medical Center, Columbus, OH, USA.
Christopher C OakesDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
Eric KrautDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
Amy S RuppertDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
Qiuhong ZhaoDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
Seema A BhatDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
Francesco ForconiCancer Sciences and Haematology Department, University of Southampton Hospital Trust, Southampton, UK.
Versha BanerjiDepartment of Internal Medicine & Biochemistry and Medical Genetics, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada.
Sasanka HandunnettiHaematology Department, Peter MacCallum Cancer Centre & Royal Melbourne Hospital, University of Melbourne, Melbourne, Australia.
Constantine S TamHaematology Department, Peter MacCallum Cancer Centre & Royal Melbourne Hospital, University of Melbourne, Melbourne, Australia.
John F SeymourHaematology Department, Peter MacCallum Cancer Centre & Royal Melbourne Hospital, University of Melbourne, Melbourne, Australia.
Monica ElseThe Institute of Cancer Research, London, UK.
Robert J KreitmanLaboratory of Molecular Biology, National Cancer Institute, NIH, Bethesda, MD, USA.ORCID 0000-0001-5141-1844
Alan SavenDivision of Hematology and Oncology, Scripps Clinic, La Jolla, CA, USA.
Timothy CallDivision of Hematology, Mayo Clinic, Rochester, MN, USA.
Sameer A ParikhDivision of Hematology, Mayo Clinic, Rochester, MN, USA.ORCID 0000-0002-3221-7314
Farhad RavandiDepartment of Leukemia, University of Texas MD Anderson Cancer Center, Houston, TX, USA.ORCID 0000-0002-7621-377X
James B JohnstonDepartment of Internal Medicine & Biochemistry and Medical Genetics, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada.
Enrico TiacciDepartment of Medicine and Surgery, Institute of Hematology, University and Hospital of Perugia, Perugia, Italy.
Xavier TroussardDepartment of Hematology, Centre Hospitalier Universitaire Cote de Nacre, Caen, France.
Martin S TallmanDepartment of Medicine, Memorial Sloan Kettering Cancer Center, New York, NY, USA.
Sascha DietrichDepartment of Hematology, University Hospital of Heidelberg, Heidelberg, Germany.
Tamar TadmorHematology Division, Bnai Zion Medical Center and The Ruth and Bruce Rappaport Faculty of Medicine, Technion, Haifa, Israel.
Alessandro GozzettiDepartment of Medicine, University of Siena Policlinico S Maria alle Scotte, Siena, Italy.ORCID 0000-0003-0769-6891
Pier Luigi ZinzaniDipartimento di Medicina Specialistica, Diagnostica e Sperimentale Università degli Studi, IRCCS Azienda Ospedaliero-Universitaria di Bologna and Istituto di Ematologia "Seràgnoli", Bologna, Italy.
Tadeusz RobakDepartment of Hematology, Medical University of Lodz, Lodz, Poland.ORCID 0000-0002-3411-6357
Graeme QuestPathology and Molecular Medicine, Queen's University and Kingston Health Sciences Centre, Kingston, Canada.
Judit DemeterDepartment of Internal Medicine and Oncology, Semmelweis University, Budapest, Hungary.
Kanti RaiZucker School of Medicine at Hofstra/Northwell, New Hyde Park, NY, USA.
Soledad A FernandezDepartment of Biomedical Informatics, The Ohio State University, Columbus, OH, USA.
Michael GreverDepartment of Internal Medicine, Division of Hematology, The Ohio State University, Columbus, OH, USA.
The Ohio State University · USRoyal Marsden NHS Foundation Trust · GBThe Royal Melbourne Hospital · AUMayo Clinic in Arizona · USResearch Institute in Oncology and Hematology · CABnai Zion Medical Center · ILCentre Hospitalier Universitaire de Caen Normandie · FRHeidelberg University · DEHofstra University · USInstitute of Cancer Research · GBIstituto di Ematologia di Bologna · ITMedical University of Lodz · PLMemorial Sloan Kettering Cancer Center · USNational Cancer Institute · USQueen's University · CAScripps Clinic · USSemmelweis University · HUThe Ohio State University Wexner Medical Center · USThe University of Texas MD Anderson Cancer Center · USUniversity Hospital Southampton NHS Foundation Trust · GB

Funding

X-RAY CRYSTALLOGRAPHYP30CA008748 · NCI · SLOAN-KETTERING INSTITUTE FOR CANCER RES · PI Nicholas D Socci · 1985 to 2026
$347.4M
Translational Therapeutics Research Program (TT)P30CA016058 · NCI · OHIO STATE UNIVERSITY · PI Tasleem J Padamsee · 1985 to 2026
$132.3M
The OSU Center for Clinical and Translational Science: Advancing Today's Discoveries to Improve HealthUL1TR002733 · NCATS · OHIO STATE UNIVERSITY · PI RINGEL, MATTHEW D · 2018 to 2022
$28.9M
Development of Recombinant Toxins to Treat Hematologic MalignanciesZIABC010301 · NCI · DIVISION OF BASIC SCIENCES - NCI · PI KREITMAN, ROBERT · 2009 to 2025
$21.7M
RECOMBINANT TOXINS FOR TREATMENT OF PATIENTS WITH HEMATOLOGIC MALIGNANCIESZ01BC010301 · NCI · DIVISION OF BASIC SCIENCES - NCI · PI KREITMAN, ROBERT · 1998 to 2008
$1.5M
TARGETED THERAPY CLINICAL TRIALSZ01SC006747 · SC · CLINICAL SCIENCES · PI KREITMAN, ROBERT · 1996 to 2001
–
Cancer Research UK 23669Intramural NIH HHS Z01 BC010301Intramural NIH HHS Z01 SC006747Intramural NIH HHS ZIA BC010301NCATS NIH HHS UL1 TR002733NCI NIH HHS P30 CA008748NCI NIH HHS P30 CA016058
6 · The paper itself

Abstract

Hairy cell leukemia (HCL) is a rare lymphoproliferative disorder, comprising only 2% of all leukemias. The Hairy Cell Leukemia Foundation (HCLF) has developed a patient data registry to enable investigators to better study the clinical features, treatment outcomes, and complications of patients with HCL. This system utilizes a centralized registry architecture. Patients are enrolled at HCL Centers of Excellence (COE) or via a web-based portal. All data are de-identified, which reduces regulatory burden and increases opportunities for data access and re-use. To date, 579 patients have been enrolled in the registry. Efforts are underway to engage additional COE's to expand access to patients across the globe. This international PDR will enable researchers to study outcomes in HCL in ways not previously possible due to the rarity of the disease and will serve as a platform for future prospective research.

Indexed as

Leukemia, Hairy CellHumansRegistriesTreatment OutcomeHCLoutcomesregistry

Identifiers

PMID36070610
PMCPMC9990910
OpenAlexW4294908193

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.