Publications

April 24, 2017

An International Prophylaxis Study Group (IPSG) survey of prophylaxis in inhibitor positive children/adults with severe haemophilia

Authors
Carcao MD, Avila L, Leissinger C, Blanchette VS, Aledort L; Factor Utilization Expert Working Group of the International Prophylaxis Study Group (IPSG) and participating Survey Investigators
Citation
Ahead of print. Haemophilia; April 24 2017
April 21, 2017

An International Prophylaxis Study Group (IPSG) survey of prophylaxis in adults with severe haemophilia

Authors
Carcao MD, Avila L, Leissinger C, Blanchette VS, Aledort L
Citation
Ahead of print. Haemophilia; April 21 2017
March 30, 2017

Tailoring treatment of haemophilia B: accounting for the distribution and clearance of standard and extended half-life FIX concentrates

Authors
Iorio A, K. Fischer BM, Blanchette V, Rangarajan S, Young G, Morfini M, for the Pharmacokinetic (PK) Expert Working Group of the International Prophylaxis Study Group (the IPSG)
Citation
Ahead of print. Thrombosis and Haemostasis; March 30 2017
July 7, 2016

Correlating clinical and radiological assessment of joints in haemophilia: results of a cross sectional study

Authors
Poonnoose PM, Hilliard P, Doria AS, Keshava SN, Gibikote S, Kavitha ML, Feldman BM, Blanchette V, Srivastava A
Citation
Haemophilia 2016, (6), 925-933
March 1, 2016

Securing reimbursement for patient centered haemophilia care: major collaborative efforts are needed.

Authors
Berger K, Feldman BM, Wasserman J, Schramm W, Blanchette VS, Fischer K on behalf of the Outcome Measures Expert Working Group of the IPSG
Citation
Haematologica; March 2016 101: 266-268
December 7, 2015

Hemophilia prophylaxis no longer just for children without inhibitors – increasing use of prophylaxis in other groups (children with inhibitors and adults with and without inhibitors).

Authors
Carcao M, Avila L, Blanchette V, Santagostino E, Escuriola-Ettingshausen C, Leissinger C, Lambert T, Aledort L on behalf of the International Prophylaxis Study Group (IPSG) and Survey Investigators
Citation
57th American Society of Hematology Meeting 2015.
June 1, 2015

Prophylaxis in adult patients with severe hemophilia A or B without inhibitors.

Authors
Aledort L, Avila ML, Blanchette V, Lambert T and On behalf of Factor Utilization Expert Working Group of the International Prophylaxis Study Group (IPSG) and other Survey Investigators.
Citation
Journal of Thrombosis and Haemostasis 2015, 13 (S2), # OR105, 134
June 1, 2015

Prophylaxis practices in children and adults with inhibitors.

Authors
Carcao M, Avila M, Aledort L, Leissinger C on behalf of Factor Utilization Expert Working Group of the International Prophylaxis Study Group (IPSG) and other Survey Investigators
Citation
Journal of Thrombosis and Haemostasis 2015, 13 (S2), # PO270-MON, 360.
April 25, 2015

Global utilization of the International Prophylaxis Study Group (IPSG) physical therapy education web-site module

Authors
Hilliard P, Abad A, Feldman B M, Funk S, Manco-Johnson M, Petrini P, van der Net J, Zourikian N, and Blanchette VS on behalf of the International Prophylaxis Study Group.
Citation
Haemophilia 2014, 20 (S3), 134-135
April 25, 2015

Inter-reader reliability of minimum and full MRI protocols for interpretation of findings in hemophilic arthropathy in children.

Authors
Castro D, Lundin B, Zhang N, Ignas D, Carcao M, Moineddin R, Man C, Blanchette VS, and Doria AS
Citation
Haemophilia 2014, 20 (S3), 89
July 1, 2012

Tertiary prophylaxis in adults: What is the rationale?

Authors
Gringeri A, Lambert T, Street A, and Aledort L. on behalf of the Adolescent/Adult Prophylaxis Study Group of the International Prophylaxis Study Group.
Citation
Haemophilia 2012 Sept; 18 (5): 722-728
May 1, 2012

An MRI scale for assessment of hemophilic arthropathy from the International Prophylaxis Study Group.

Authors
Lundin B, Manco-Johnson ML, Ignas DM, Moineddin R, Blanchette VS, Dunn AL, Gibikote SV, Keshava SN, Ljung R, Manco-Johnson MJ, Miller SF, Rivard GE, Doria AS on behalf of the International Prophylaxis Study Group.
Citation
Haemophilia 2012 Nov; 18 (6):962-70
April 17, 2012

Hemophilia Prophylaxis: How can we justify the costs?

Authors
Feldman BM, Berger K, Bohn R, Carcao M, Fischer K, Gringeri A, Hoots K, Mantovani L, Willan A, and Schramm W.
Citation
Haemophilia 2012 Sept; 18 (5): 680-684.
February 22, 2012

Why should we Care about Quality of Life in Hemophilia?

Authors
Aledort L, Bullinger M, von Mackensen S, Wasserman J, and Young NL. on behalf of the Health Related Quality of Life Expert Working Group of the International Prophylaxis Study Group.
Citation
Haemophilia 2012; May 18 (3) : e154 – e157.
July 23, 2011

An MRI scale for Assessment of Hemophilic Arthropathy from the International Prophylaxis Study Group

The XXIII International Society on Thrombosis & Haemostasis Congress (July 23-28, 2011 – Kyoto, Japan).
Authors
Lundin B, Manco-Johnson ML, Ignas D, Moineddin R , Babyn P, Blanchette VS, Dunn A , Gibikote SV, Keshava SN, Ljung R, Manco-Johnson MJ ,Miller SF, Rivard GE, Doria AS on behalf of the International Prophylaxis Study Group.
Citation
Award: Red ribbon award for the top ranked 20% of poster presentations.
July 1, 2011

An MRI scale for assessment of hemophilic arthropathy from the International Prophylaxis Study Group

Haemophilia 2012 Nov; 18 (6):962-70
Authors
Lundin B, Manco-Johnson ML, Ignas DM, Moineddin R, Blanchette VS, Dunn AL, Gibikote SV, Keshava SN, Ljung R, Manco-Johnson MJ,Miller SF, Rivard GE, Doria AS on behalf of the International Prophylaxis Study Group.
Citation
Accepted to the XXIII International Society on Thrombosis and Haemostasis Congress (July 23-28, 2011 – Koyoto, Japan).
January 28, 2011

Validation of a new pediatric joint scoring system from the International Hemophilia Prophylaxis Study Group: Validity of the Hemophilia Joint Health Score (HJHS).

Authors
Feldman BM, Funk S, Bergstrom B-M, Zourikian N, Hilliard P, van der Net J, Engelbert RHH, Petrini P, van den Berg M , Manco-Johnson M, Rivard GE, Abad A, and Blanchette VS.
Citation
Arthritis Care & Research 2011 Feb; 63 (2):223-30.
August 22, 2010

Implications of coagulation factor VIII and IX pharmacokinetics for clinical practice.

Authors
Collins PW, et.al on behalf of the Pharmacokinetics in Prophylaxis Expert Working Group of the International Prophylaxis Study Group
Citation
Haemophilia 2011 Jan; 17(1):2-10.
October 29, 2009

Use of the Hemophilia Joint Health Score

Physical Therapy Pre-Conference Symposium National Hemophilia Foundation 2009 Annual Meeting (October 29-31, 2009 - San Francisco, CA, USA).
Authors
Funk, S.
Citation
April 7, 2009

Challenges of Patient-Reported Outcome Assessment in Hemophilia Care – A State of the Art Review.

Authors
Bullinger M, Globe D, Wasserman J, Young NL, von Mackensen S.
Citation
Value in Health 2009 Jul/Aug ; 12 (5): 808-820.
April 7, 2009

Measuring patient-reported outcomes in haemophilia clinical research.

Authors
Globe D, Young NL, von Mackensen S, Bullinger M, and Wasserman J on behalf of the health-related quality of life expert working group of the International Prophylaxis Study Group.
Citation
Haemophilia 2009 Jul; 15 (4): 843-852.
July 1, 2008

The Haemophilia Joint Health Score (HJHS) international validation study.

Authors
Feldman B M, Funk S, Hilliard P, van der Net J, Zourikian N, Bergstrom B-M, Engelbert RHH, Abad A, Petrini P, Manco-Johnson M, and on behalf of the International Prophylaxis Study Group.
Citation
Haemophilia 2008, 14 (S2), 83 # 12 PO 85.
July 1, 2008

A review of health economic studies in hemophilia prophylaxis: a collaboration of the economics expert working group of the International Prophylaxis Study Group (IPSG).

Authors
Carcao M, Fischer K, Steen-Carlsson K, Schramm W, Feldman B, and Berger K.
Citation
Haemophilia 2008, 14 (S2), 133 # 24 PO 17.
June 1, 2008

A review of health economic studies in hemophilia prophylaxis: a collaboration of the economics expert working group of the International Prophylaxis Study Group (IPSG)

The XXVIII World Federation of Hemophillia Congress (June 1-5, 2008 – Istanbul, Turkey).
Authors
Carcao M, Fischer K, Steen-Carlsson K, Schramm W, Feldman B, and Berger K.
Citation
June 1, 2008

The Haemophilia Joint Health Score (HJHS) international validation study

The XXVIII World Federation of Hemophillia Congress (June 1-5, 2008 – Istanbul, Turkey).
Authors
Feldman B M, Funk S, Hilliard P, van der Net J, Zourikian N, Bergstrom B-M, Engelbert RHH, Abad A, Petrini P, Manco-Johnson M, and on behalf of the International Prophylaxis Study Group.
Citation
June 1, 2008

PT HJHS Pre-Congress Workshop

The XXVII International Congress of the World Federation of Hemophillia (June 1-5, 2008 – Istanbul, Turkey)
Authors
Hilliard, P, Funk S, Zourikian N, Bergstrom B-M, van der Net JJ, and Feldman BM
Citation
June 1, 2008

Musculoskeletal measurement tools from the International Prophylaxis Study Group (IPSG)

The XXVIII World Federation of Hemophilia Congress (June 1-5, 2008 – Istanbul, Turkey) Invited symposium as part of the scientific program of the WFH Congress (Chair: Dr. Victor Blanchette). Dr. Victor Blanchette, Overview of the International Prophylaxis Study Group, Ms. Sharon Funk and Dr. Brian Feldman, Hemophilia Joint Health Score. Dr. Andrea Doria and Dr. Bjorn Lundin, Role of MRI for detection of early arthropathy: A proposed new International MRI Score.
Authors
Feldman BM, Funk S, Lundin B, Doria AS, Blanchette V.
Citation
May 16, 2008

Musculoskeletal measurement tools from the International Prophylaxis Study Group (IPSG).

Authors
Feldman BM, Funk S, Lundin B, Doria AS, Ljung R, and Blanchette V.
Citation
Haemophilia 2008, 14 (Suppl. 3), 162-169.
April 23, 2008

Introduction of Hemophilia Joint Health Score

Second Buzias Hemophilia Rehab Meeting (April 23-24, 2008 - Buzias, Romania)
Authors
van der Net J
Citation
December 30, 2007

Reliability and construct validity of the compatible MRI scoring system for evaluation of elbows in haemophilic children.

Authors
Doria AS, Lundin B, Miller S, Kilcoyne R (In Memoriam), Dunn A, Thomas S, Rivard G, Moineddin R, Babyn PS, and the Expert Imaging Working Group of the International Prophylaxis Study Group.
Citation
Haemophilia 2008 Mar; 14 (2): 303 - 314.
November 25, 2007

Measurement Properties of the Compatible MRI Scoring System for Evaluation of Hemophilic Elbows in Children

RSNA 93rd Scientific Assembly and 2007 Annual Meeting (Nov 25-30, 2007, Chicago, U.S.A.)
Authors
Babyn PS on behalf of the Expert MRI Working Group of the IPSG
Citation
November 13, 2007

Recommendations for reporting economic evaluations of haemophilia prophylaxis: a nominal groups consensus statement on behalf of the Economics Expert Working Group of the International Prophylaxis Study Group.

Authors
Nicholson A, Berger K, Bohn R, Carcao M, Fischer K, Gringeri A, Mantovani L, Hoots K,, Schramm W, van Hout BA, Willan AR, and Feldman BM.
Citation
Haemophilia 2008 Jan; 14 (1):127 -132.
September 10, 2007

The economics of haemophilia prophylaxis: governmental and insurer perspectives. Proceedings of the Second International Prophylaxis Study Group (IPSG) Symposium.

Authors
Feldman BM, Aledort L, Bullinger M, Delaney FM, Doria AS, Funk S, Giangrande P, Lundin B, Manco-Johnson M, Miners A, Scriba PC, Srivastava A, Schramm W and Blanchette VS.
Citation
Haemophilia 2007 Nov; 13 (6): 745-749.
January 19, 2007

Hemophilia Joint Health Score

Haemophilia Physiotherapists Meeting (January 19, 2007 – Birmingham, UK)
Authors
Hilliard P.
Citation
January 1, 2007

Measurement Properties of the Compatible MRI Scoring System for Evaluation of Hemophilic Elbows in Children.

Authors
Doria AS, Lundin B, Miller SF, Thomas S, Dunn A, and Babyn PS.
Citation
RSNA 93rd Scientific Assembly and 2007 Annual Meeting, #LL-PD2090-RO1.
August 15, 2006

Hemophilia joint health score reliability study.

Authors
Hilliard P, Funk S, Zourikian N, Bergstrom B-M, Bradley CS, McLimont M, Manco-Johnson M, Petrini P, van den Berg M, and Feldman BM.
Citation
Haemophilia 2006 Sept; 12: 518 – 525.
August 15, 2006

Reliability study of the Hemophilia Joint Health Score.

Authors
Hilliard P, Funk S, Zourikian N, Bergstrom B-M, Bradley CS, McLimont M, Manco-Johnson M, Petrini P, van den Berg M, and Feldman BM.
Citation
Haemophilia 2004 Oct; 10 (S3): 79 # 16 S 03.
August 15, 2006

Reliability and construct validity of the compatible MRI scoring system for evaluation of haemophilic knees and ankles of haemophilic children. Expert MRI Working Group of the International Prophylaxis Study Group.

Authors
Doria AS, Babyn PS, Lundin B, Kilcoyne RF, Miller S, Rivard GE, Moineddin R, and Pettersson H.
Citation
Haemophilia 2006 Sept; 12: 503 – 513.
June 10, 2006

Hemophilia Joint Health Score instructional video and manual.

Authors
Hilliard P, Abad A, Bradley CS, Funk S, Zourikian N, and Bergstrom B-M.
Citation
Haemophilia 2006 May; 12 (S2): # 18 FP 532
May 21, 2006

MRI Scoring Systems in hemophilic arthropathy

The XXVII World Federation of Hemophillia Congress (May 21-25, 2006 - Vancouver, Canada).
Authors
Lundin B, Doria A, Kilcoyne R, Babyn P, Miller S, Nuss R, Rivard G, Pettersson H, and Blanchette V.
Citation
May 21, 2006

Discriminant validity and reliability of the Compatible MRI Scoring System for assessment of hemophilic arthropathy in children

The XXVII World Federation of Hemophillia Congress (May 21-25, 2006 - Vancouver, Canada).
Authors
Doria AS, Lundin B, Kilcoyne RF, Babyn PS, Miller SW, Nuss R, Rivard G, Pettersson HT, and Blanchette V.
Citation
May 21, 2006

Recent developments in clinimetric instruments

The XXVII World Federation of Hemophillia Congress (May 21-25, 2006 - Vancouver, Canada) Invited symposium as part of the scientific program of the WFH Congress (Chair: Karen Beeton). Funk S & Hilliard P – International Joint Health Score: Clinical Scoring System
Authors
Funk S, Hilliard P, Doria AS, Lundin B on behalf of the IPSG
Citation
May 21, 2006

Hemophilia Joint Health Score Instructional Video and Manual

The XXVII World Federation of Hemophillia Congress (May 21-25, 2006 - Vancouver, Canada)
Authors
Hilliard P on behalf of the IPSG
Citation
May 21, 2006

Hemophilia Joint Health Score instructional video and manual

The XXVII World Federation of Hemophillia Congress (May 21-25, 2006 - Vancouver, Canada).
Authors
Hilliard P, Abad A, Bradley CS, Funk S, Zourikian N, and Bergstrom B-M.
Citation
May 10, 2006

MRI scoring systems in hemophilic arthropathy.

Authors
Lundin B, Doria A, Kilcoyne R, Babyn P, Miller S, Nuss R, Rivard G, Pettersson H, and Blanchette V.
Citation
Haemophilia 2006 May; 12 (S2): # 22 S 685
May 10, 2006

Discriminant validity and reliability of the Compatible MRI Scoring System for assessment of hemophilic arthropathy in children.

Authors
Doria A, Lundin B, Kilcoyne RF, Babyn PS, Miller SW, Pettersson HT, and Blanchette V.
Citation
Haemophilia 2006 May; 12 (S2): # 22 S 686
March 4, 2006

Are randomized clinical trials the only truth? Not always

Authors
Aledort L, Ljung R, and Blanchette V on behalf of the International Prophylaxis Study Group (IPSG)
Citation
Journal of Thrombosis and Haemostasis 2006 Mar; 4 (3): 503 - 504.
January 1, 2006

Medical experts explore global differences in factor replacement therapy

Authors
Srivastava, A
Citation
Hemophilia World, Jan. 2006:15.
September 9, 2005

Radiological Scoring in Hemophilic Arthropathy

The IX World Federation of Hemophilia Musculoskeletal Congress (September 9-11, 2005 - Istanbul, Turkey).
Authors
Lundin B and Blanchette V on behalf of the IPSG MRI Working Group
Citation
May 5, 2005

Reliability of progressive and additive MRI scoring systems for evaluation of haemophilic arthropathy in children: Expert MRI Working Group of the International Prophylaxis Study Group.

Authors
Doria AS, Lundin B, Kilcoyne RF, Babyn PS, Miller S, Nuss R, Rivard G, Stephens D, and Pettersson H.
Citation
Haemophilia 2005 May; 11: 245 – 253
May 5, 2005

Reliability of progressive and additive MRI scoring systems for evaluation of hemophilic arthropathy in children: International MRI Working Group.

Authors
Doria A, Lundin B, Kilcoyne R, Nuss R, Miller S, Babyn P, Stephens D, and Pettersson H.
Citation
Haemophilia 2004 Oct; 10 (S3): 84 # 16 PO 37.
March 15, 2005

Compatible scales for progressive and additive MRI assessments of haemophilic arthropathy.

Authors
Lundin B, Babyn P, Doria AS, Kilcoyne R, Ljung R, Miller S, Nuss R, Rivard GE, and Pettersson H on behalf of the International Prophylaxis Study Group.
Citation
Haemophilia 2005 Mar; 11: 109 – 115.
March 15, 2005

Compatible scales for progressive and additive magnetic resonance imaging assessments of haemophilic arthropathy.

Authors
Lundin B, Nuss R, Kilcoyne R, Doria A, Pettersson H, and Ljung R.
Citation
Haemophilia 2004 Oct; 10 (S3): 79 # 16 S 02.
March 11, 2005

Commentary: Magnetic resonance imaging as an evaluative tool in haemophilic arthropathy.

Authors
Medical Advisory Board, World Federation of Haemophilia, and The International Prophylaxis Study Group
Citation
Haemophilia 2005 Mar; 11: 107 – 108.
January 21, 2005

Proceedings of the International Haemophilia Prophylaxis Study Group Meeting November 2003, Montreal, PQ, Canada.

Authors
Feldman BM, Babyn P, Doria AS, Heijnen L, Jacobson J, Kilcoyne R, Lundin B, Manco-Johnson M, McLimont M, Petrini P, Pettersson H, and Blanchette VS on behalf of the IPSG.
Citation
Haemophilia 2005 Jan; 11: 58 – 63.
October 17, 2004

Physical therapy and imaging outcome measures in a haemophilia population treated with factor prophylaxis: current status and future directions

The XXVI World Federation of Hemophillia Congress (October 17-21, 2004 - Bangkok, Thailand). Invited symposium as part of the scientific program of the WFH Congress (Chairs: Dr. Victor. Blanchette and Dr. Marilyn Manco-Johnson). Dr. Victor Blanchette, Opening remarks. Dr. Bjorn Lundin, X-ray.MRI Scoring Systems: Overview. Dr. Andrea Doria, Compatible Scales for progressive and additive MRI of hemophilic arthropathy. Dr. Pia Petrini, Physical Therapy Scale Overview. Dr. Brian Feldman, Reliability of the Hemophilia Joint Health Score (HJHS).
Authors
Doria AS, Feldman BM, Lundin B, and Blanchette VS on behalf of the IPSG
Citation
October 17, 2004

Reliability study of the Hemophilia Joint Health Score

The XXVI World Federation of Hemophillia Congress (October 17-21, 2004 - Bangkok, Thailand).
Authors
Hilliard P, Funk S, Zourikian N, Bergstrom B-M, Bradley CS, McLimont M, Manco-Johnson M, Petrini P, van den Berg M, and Feldman BM.
Citation
October 17, 2004

Compatible scales for progressive and additive magnetic resonance imaging assessments of haemophilic arthropathy

The XXVI World Federation of Hemophillia Congress (October 17-21, 2004 - Bangkok, Thailand).
Authors
Lundin B, Nuss R, Kilcoyne R, Doria A, Pettersson H, and Ljung R
Citation
October 17, 2004

Reliability of progressive and additive MRI scoring systems for evaluation of hemophilic arthropathy in children: International MRI Working Group

The XXVI World Federation of Hemophillia Congress (October 17-21, 2004 - Bangkok, Thailand).
Authors
Doria A, Lundin B, Kilcoyne R, Nuss R, Miller S, Babyn P, Stephens D, and Pettersson H.
Citation
October 8, 2004

Physical therapy and imaging outcome measures in a haemophilia population treated with factor prophylaxis: current status and future directions.

Authors
Manco-Johnson MJ, Pettersson H, Petrini P, Babyn PS, Bergstrom B-M, Bradley CS , Doria AS, Feldman BM, Funk S, Hilliard P, Kilcoyne R, Lundin B, Nuss R, Rivard G, Schoenmakers MA, van den berg M, Wiedel J, Zourikian N, and Blanchette VS.
Citation
Haemophilia 2004 Oct; 10 (S4):88 – 93.