Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.

The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation be...
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Gespeichert in:

Autor*in:	Cicala, Gianpaolo [verfasserIn] Pane, Marika [verfasserIn] Coratti, Giorgia [verfasserIn] Brogna, Claudia [verfasserIn] Fanelli, Lavinia [verfasserIn] Norcia, Giulia [verfasserIn] Forcina, Nicola [verfasserIn] Mazzone, Elena [verfasserIn] Stanca, Giulia [verfasserIn] Ferrante, Roberta [verfasserIn] Vento, Alessandra [verfasserIn] Ferraroli, Elisabetta [verfasserIn] Ricci, Martina [verfasserIn] Capasso, Anna [verfasserIn] Leone, Daniela [verfasserIn] Palermo, Concetta [verfasserIn] Berti, Beatrice [verfasserIn] Cutrona, Costanza [verfasserIn] Mahyew, Anna [verfasserIn] Duong, Tina [verfasserIn] Goemans, Natalie [verfasserIn] Vroom, Elizabeth [verfasserIn] Mercuri, Eugenio [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2023

Schlagwörter:	Duchenne Upper limb Patient reported outcome measures Functional

Übergeordnetes Werk:	Enthalten in: Neuromuscular disorders - Amsterdam [u.a.] : Elsevier Science, 1991, 33, Seite 69-73
Übergeordnetes Werk:	volume:33 ; pages:69-73

DOI / URN:	10.1016/j.nmd.2023.07.003

Katalog-ID:	ELV064431134

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245	1	0	\|a Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.
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520			\|a The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement.
650		4	\|a Duchenne
650		4	\|a Upper limb
650		4	\|a Patient reported outcome measures
650		4	\|a Functional
700	1		\|a Pane, Marika \|e verfasserin \|4 aut
700	1		\|a Coratti, Giorgia \|e verfasserin \|4 aut
700	1		\|a Brogna, Claudia \|e verfasserin \|4 aut
700	1		\|a Fanelli, Lavinia \|e verfasserin \|4 aut
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700	1		\|a Forcina, Nicola \|e verfasserin \|4 aut
700	1		\|a Mazzone, Elena \|e verfasserin \|4 aut
700	1		\|a Stanca, Giulia \|e verfasserin \|4 aut
700	1		\|a Ferrante, Roberta \|e verfasserin \|4 aut
700	1		\|a Vento, Alessandra \|e verfasserin \|4 aut
700	1		\|a Ferraroli, Elisabetta \|e verfasserin \|4 aut
700	1		\|a Ricci, Martina \|e verfasserin \|4 aut
700	1		\|a Capasso, Anna \|e verfasserin \|4 aut
700	1		\|a Leone, Daniela \|e verfasserin \|4 aut
700	1		\|a Palermo, Concetta \|e verfasserin \|4 aut
700	1		\|a Berti, Beatrice \|e verfasserin \|4 aut
700	1		\|a Cutrona, Costanza \|e verfasserin \|4 aut
700	1		\|a Mahyew, Anna \|e verfasserin \|4 aut
700	1		\|a Duong, Tina \|e verfasserin \|4 aut
700	1		\|a Goemans, Natalie \|e verfasserin \|4 aut
700	1		\|a Vroom, Elizabeth \|e verfasserin \|4 aut
700	1		\|a Mercuri, Eugenio \|e verfasserin \|0 (orcid)0000-0002-9851-5365 \|4 aut
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allfields	10.1016/j.nmd.2023.07.003 doi (DE-627)ELV064431134 (ELSEVIER)S0960-8966(23)00171-2 DE-627 ger DE-627 rda eng 610 VZ 44.90 bkl Cicala, Gianpaolo verfasserin aut Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0. 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement. Duchenne Upper limb Patient reported outcome measures Functional Pane, Marika verfasserin aut Coratti, Giorgia verfasserin aut Brogna, Claudia verfasserin aut Fanelli, Lavinia verfasserin aut Norcia, Giulia verfasserin aut Forcina, Nicola verfasserin aut Mazzone, Elena verfasserin aut Stanca, Giulia verfasserin aut Ferrante, Roberta verfasserin aut Vento, Alessandra verfasserin aut Ferraroli, Elisabetta verfasserin aut Ricci, Martina verfasserin aut Capasso, Anna verfasserin aut Leone, Daniela verfasserin aut Palermo, Concetta verfasserin aut Berti, Beatrice verfasserin aut Cutrona, Costanza verfasserin aut Mahyew, Anna verfasserin aut Duong, Tina verfasserin aut Goemans, Natalie verfasserin aut Vroom, Elizabeth verfasserin aut Mercuri, Eugenio verfasserin (orcid)0000-0002-9851-5365 aut Enthalten in Neuromuscular disorders Amsterdam [u.a.] : Elsevier Science, 1991 33, Seite 69-73 Online-Ressource (DE-627)320469093 (DE-600)2008287-3 (DE-576)094505535 1873-2364 nnns volume:33 pages:69-73 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.90 Neurologie VZ AR 33 69-73
spelling	10.1016/j.nmd.2023.07.003 doi (DE-627)ELV064431134 (ELSEVIER)S0960-8966(23)00171-2 DE-627 ger DE-627 rda eng 610 VZ 44.90 bkl Cicala, Gianpaolo verfasserin aut Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0. 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement. Duchenne Upper limb Patient reported outcome measures Functional Pane, Marika verfasserin aut Coratti, Giorgia verfasserin aut Brogna, Claudia verfasserin aut Fanelli, Lavinia verfasserin aut Norcia, Giulia verfasserin aut Forcina, Nicola verfasserin aut Mazzone, Elena verfasserin aut Stanca, Giulia verfasserin aut Ferrante, Roberta verfasserin aut Vento, Alessandra verfasserin aut Ferraroli, Elisabetta verfasserin aut Ricci, Martina verfasserin aut Capasso, Anna verfasserin aut Leone, Daniela verfasserin aut Palermo, Concetta verfasserin aut Berti, Beatrice verfasserin aut Cutrona, Costanza verfasserin aut Mahyew, Anna verfasserin aut Duong, Tina verfasserin aut Goemans, Natalie verfasserin aut Vroom, Elizabeth verfasserin aut Mercuri, Eugenio verfasserin (orcid)0000-0002-9851-5365 aut Enthalten in Neuromuscular disorders Amsterdam [u.a.] : Elsevier Science, 1991 33, Seite 69-73 Online-Ressource (DE-627)320469093 (DE-600)2008287-3 (DE-576)094505535 1873-2364 nnns volume:33 pages:69-73 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.90 Neurologie VZ AR 33 69-73
allfields_unstemmed	10.1016/j.nmd.2023.07.003 doi (DE-627)ELV064431134 (ELSEVIER)S0960-8966(23)00171-2 DE-627 ger DE-627 rda eng 610 VZ 44.90 bkl Cicala, Gianpaolo verfasserin aut Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0. 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement. Duchenne Upper limb Patient reported outcome measures Functional Pane, Marika verfasserin aut Coratti, Giorgia verfasserin aut Brogna, Claudia verfasserin aut Fanelli, Lavinia verfasserin aut Norcia, Giulia verfasserin aut Forcina, Nicola verfasserin aut Mazzone, Elena verfasserin aut Stanca, Giulia verfasserin aut Ferrante, Roberta verfasserin aut Vento, Alessandra verfasserin aut Ferraroli, Elisabetta verfasserin aut Ricci, Martina verfasserin aut Capasso, Anna verfasserin aut Leone, Daniela verfasserin aut Palermo, Concetta verfasserin aut Berti, Beatrice verfasserin aut Cutrona, Costanza verfasserin aut Mahyew, Anna verfasserin aut Duong, Tina verfasserin aut Goemans, Natalie verfasserin aut Vroom, Elizabeth verfasserin aut Mercuri, Eugenio verfasserin (orcid)0000-0002-9851-5365 aut Enthalten in Neuromuscular disorders Amsterdam [u.a.] : Elsevier Science, 1991 33, Seite 69-73 Online-Ressource (DE-627)320469093 (DE-600)2008287-3 (DE-576)094505535 1873-2364 nnns volume:33 pages:69-73 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.90 Neurologie VZ AR 33 69-73
allfieldsGer	10.1016/j.nmd.2023.07.003 doi (DE-627)ELV064431134 (ELSEVIER)S0960-8966(23)00171-2 DE-627 ger DE-627 rda eng 610 VZ 44.90 bkl Cicala, Gianpaolo verfasserin aut Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0. 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement. Duchenne Upper limb Patient reported outcome measures Functional Pane, Marika verfasserin aut Coratti, Giorgia verfasserin aut Brogna, Claudia verfasserin aut Fanelli, Lavinia verfasserin aut Norcia, Giulia verfasserin aut Forcina, Nicola verfasserin aut Mazzone, Elena verfasserin aut Stanca, Giulia verfasserin aut Ferrante, Roberta verfasserin aut Vento, Alessandra verfasserin aut Ferraroli, Elisabetta verfasserin aut Ricci, Martina verfasserin aut Capasso, Anna verfasserin aut Leone, Daniela verfasserin aut Palermo, Concetta verfasserin aut Berti, Beatrice verfasserin aut Cutrona, Costanza verfasserin aut Mahyew, Anna verfasserin aut Duong, Tina verfasserin aut Goemans, Natalie verfasserin aut Vroom, Elizabeth verfasserin aut Mercuri, Eugenio verfasserin (orcid)0000-0002-9851-5365 aut Enthalten in Neuromuscular disorders Amsterdam [u.a.] : Elsevier Science, 1991 33, Seite 69-73 Online-Ressource (DE-627)320469093 (DE-600)2008287-3 (DE-576)094505535 1873-2364 nnns volume:33 pages:69-73 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.90 Neurologie VZ AR 33 69-73
allfieldsSound	10.1016/j.nmd.2023.07.003 doi (DE-627)ELV064431134 (ELSEVIER)S0960-8966(23)00171-2 DE-627 ger DE-627 rda eng 610 VZ 44.90 bkl Cicala, Gianpaolo verfasserin aut Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0. 2023 nicht spezifiziert zzz rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement. Duchenne Upper limb Patient reported outcome measures Functional Pane, Marika verfasserin aut Coratti, Giorgia verfasserin aut Brogna, Claudia verfasserin aut Fanelli, Lavinia verfasserin aut Norcia, Giulia verfasserin aut Forcina, Nicola verfasserin aut Mazzone, Elena verfasserin aut Stanca, Giulia verfasserin aut Ferrante, Roberta verfasserin aut Vento, Alessandra verfasserin aut Ferraroli, Elisabetta verfasserin aut Ricci, Martina verfasserin aut Capasso, Anna verfasserin aut Leone, Daniela verfasserin aut Palermo, Concetta verfasserin aut Berti, Beatrice verfasserin aut Cutrona, Costanza verfasserin aut Mahyew, Anna verfasserin aut Duong, Tina verfasserin aut Goemans, Natalie verfasserin aut Vroom, Elizabeth verfasserin aut Mercuri, Eugenio verfasserin (orcid)0000-0002-9851-5365 aut Enthalten in Neuromuscular disorders Amsterdam [u.a.] : Elsevier Science, 1991 33, Seite 69-73 Online-Ressource (DE-627)320469093 (DE-600)2008287-3 (DE-576)094505535 1873-2364 nnns volume:33 pages:69-73 GBV_USEFLAG_U GBV_ELV SYSFLAG_U SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_187 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2007 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2026 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2088 GBV_ILN_2106 GBV_ILN_2110 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2232 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4338 GBV_ILN_4393 GBV_ILN_4700 44.90 Neurologie VZ AR 33 69-73
language	English
source	Enthalten in Neuromuscular disorders 33, Seite 69-73 volume:33 pages:69-73
sourceStr	Enthalten in Neuromuscular disorders 33, Seite 69-73 volume:33 pages:69-73
format_phy_str_mv	Article
bklname	Neurologie
institution	findex.gbv.de
topic_facet	Duchenne Upper limb Patient reported outcome measures Functional
dewey-raw	610
isfreeaccess_bool	false
container_title	Neuromuscular disorders
authorswithroles_txt_mv	Cicala, Gianpaolo @@aut@@ Pane, Marika @@aut@@ Coratti, Giorgia @@aut@@ Brogna, Claudia @@aut@@ Fanelli, Lavinia @@aut@@ Norcia, Giulia @@aut@@ Forcina, Nicola @@aut@@ Mazzone, Elena @@aut@@ Stanca, Giulia @@aut@@ Ferrante, Roberta @@aut@@ Vento, Alessandra @@aut@@ Ferraroli, Elisabetta @@aut@@ Ricci, Martina @@aut@@ Capasso, Anna @@aut@@ Leone, Daniela @@aut@@ Palermo, Concetta @@aut@@ Berti, Beatrice @@aut@@ Cutrona, Costanza @@aut@@ Mahyew, Anna @@aut@@ Duong, Tina @@aut@@ Goemans, Natalie @@aut@@ Vroom, Elizabeth @@aut@@ Mercuri, Eugenio @@aut@@
publishDateDaySort_date	2023-01-01T00:00:00Z
hierarchy_top_id	320469093
dewey-sort	3610
id	ELV064431134
language_de	englisch
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author	Cicala, Gianpaolo
spellingShingle	Cicala, Gianpaolo ddc 610 bkl 44.90 misc Duchenne misc Upper limb misc Patient reported outcome measures misc Functional Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.
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topic_title	610 VZ 44.90 bkl Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0. Duchenne Upper limb Patient reported outcome measures Functional
topic	ddc 610 bkl 44.90 misc Duchenne misc Upper limb misc Patient reported outcome measures misc Functional
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title	Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.
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title_full	Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.
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author_browse	Cicala, Gianpaolo Pane, Marika Coratti, Giorgia Brogna, Claudia Fanelli, Lavinia Norcia, Giulia Forcina, Nicola Mazzone, Elena Stanca, Giulia Ferrante, Roberta Vento, Alessandra Ferraroli, Elisabetta Ricci, Martina Capasso, Anna Leone, Daniela Palermo, Concetta Berti, Beatrice Cutrona, Costanza Mahyew, Anna Duong, Tina Goemans, Natalie Vroom, Elizabeth Mercuri, Eugenio
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title_sort	patient reported outcome measure for upper limb in duchenne muscular dystrophy: correlation with pul2.0.
title_auth	Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.
abstract	The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement.
abstractGer	The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement.
abstract_unstemmed	The increasing pressure to include non ambulant Duchenne muscular dystrophy (DMD) boys in clinical trials has highlighted the need for outcome measures that could address the impact of upper limb function on activities of daily living. The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. The strong correlation between the two tools confirms the clinical meaningfulness of the PUL2.0 and that the PROM UL can help to detect the gradient of progression of upper limb involvement.
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title_short	Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.
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author2	Pane, Marika Coratti, Giorgia Brogna, Claudia Fanelli, Lavinia Norcia, Giulia Forcina, Nicola Mazzone, Elena Stanca, Giulia Ferrante, Roberta Vento, Alessandra Ferraroli, Elisabetta Ricci, Martina Capasso, Anna Leone, Daniela Palermo, Concetta Berti, Beatrice Cutrona, Costanza Mahyew, Anna Duong, Tina Goemans, Natalie Vroom, Elizabeth Mercuri, Eugenio
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up_date	2024-07-06T20:26:54.363Z
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The aim of the present study was to establish the correlation between the recently developed Patient Reported Outcome Measure for the upper limb (PROM UL) and the observer rated functional scale Performance of Upper Limb (PUL 2.0) in a large cohort of DMD boys and young adults. As part of a larger natural history study, non ambulant DMD patients were assessed using PUL2.0 and PROM UL. One hundred and twenty-five concurrent PUL 2.0 and PROM UL evaluations from 60 non ambulant DMD boys were taken into consideration. The total PROM UL scores showed a strong correlation with both PUL 2.0 total scores and with PUL 2.0 entry item score. 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Patient reported outcome measure for upper limb in Duchenne muscular dystrophy: correlation with PUL2.0.

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