Links, Resources & Stuff to Share with Your Hematologist


Myelofibrosis Symptom Assessment Form 

  Scoring the MPNSAF

Novartis: Know your score  



Myelofibrosis on-line prognostic calculators


DIPSS risk calculator. SCT Spectrum Timing Tool (SSTT)

DIPSS+ Risk Calculator  

MIPSS Risk Calculator for Myelofibrosis  (Scoring)

MF Identification and Risk Tool (Incyte)

The Grinfeld On-line MIPSS Calculator (Pending approval)



Stem Cell Transplantation Information and Support


American Society for Blood & Marrow Transplantation (ASBMT)

Be The Match®/National Marrow Donor Program

The Bone Marrow Foundation

BMT InfoNet

Bone Marrow Transplant Online Community

Center for International Blood and Marrow Transplant Research CIBMTR



Additional Information and Support



Genny’s Hope Foundation

Leukemia and Lymphoma Society


Roundtable: Stem Cell Transplantation in Myeloproliferative Neoplasms

 MPN Research Foundation   

MPN Voice

National Bone Marrow Transplant Link

National survey of blood and marrow transplant center personnel, infrastructure and models of care delivery – 2015

Transplant Center Search

U. S. Dept. of Health & Human Services, Health Resources and Services Administration (HRSA)



Myelofibrosis Prognostic Scales, Journal Publications


MIPSS —  Vannucchi AM, Guglielmelli P, Rotunno G, et al. Mutation-enhanced International Prognostic Scoring System (MIPSS) for primary myelofibrosis: an AGIMM & IWG-MRT project. Blood. 2014;124(21):405-405. content/124/21/405?sso-checked=true.

DIPSS — Passamonti F, Cervantes F, Vannucchi AM, et al. A dynamic prognostic model to predict survival in primary myelofibrosis: a study by the IWG-MRT (International Working Group for Myeloproliferative Neoplasms Research and Treatment). Blood. 2010;115(9):1703-1708. doi: 10.1182/blood-2009-09-245837.

DIPSS+ — Gangat N, Caramazza D, Vaidya R, et al. DIPSS plus: a refined dynamic International Prognostic Scoring System for primary myelofibrosis that incorporates prognostic information from karyotype, platelet count, and transfusion status. J Clin Oncol. 2011;29(4):392–397. [PubMed]

GPSS — Tefferi A, Guglielmelli P, Finke C, et al. Integration of mutations and karyotype towards a Genetics-based Prognostic Scoring System (GPSS) for primary myelofibrosis. Blood. 2014;124(21):406-406. content/124/21/406.

Dupriez B, Morel P, Demory JL, et al. Prognostic factors in agnogenic myeloid metaplasia: a report on 195 cases with a new scoring system. Blood. 1996;88(3):1013–1018. [PubMed]

IPSS — Cervantes F, Dupriez B, Pereira A, et al. New prognostic scoring system for primary myelofibrosis based on a study of the International Working Group for Myelofibrosis Research and Treatment. Blood. 2009;113(13):2895–2901. [PubMed]’

 Grinfeld, et al., Personalized Prognostic Predictions for Patients with Myeloproliferative Neoplasms through Integration of Comprehensive Genomic and Clinical Information

 Passamonti, et al., Myelofibrosis Secondary to PV and ET-Prognostic Model (MYSEC-PM)


More stuff to discuss with your hematologist


Kroeger and R, Mesa, Choosing between stem cell therapy and drugs in myelofibrosis

 D. Arber, A. Orazi et al., The 2016 revision to the World Health Organization classification of myeloid neoplasms and acute leukemia  (Fibrosis grade as independent variable.)

B.Scott, et al.,  The Dynamic International Prognostic Scoring System for myelofibrosis predicts outcomes after hematopoietic cell transplantation

Barbui, et al.,  Chronic myeloproliferative neoplasms…Chronic myeloproliferative neoplasms revised management recommendations from European LeukemiaNet,  Leukemia (2018)