The consensus among the discussions reflects a recognition of the publication's relevance, with comments like 'raising awareness' and 'expedite diagnosis' illustrating interest and perceived impact. The tone is generally positive but modest, emphasizing the publication's potential to influence care practices without deeply critiquing or engaging with technical details.
AgreementModerate agreement
Most discussions acknowledge the importance of establishing a standard of care for this complex disease, indicating general support.
InterestModerate interest
Participants are mildly interested, with some expressing curiosity about the implications and goals of the publication.
EngagementModerate engagement
Some posts mention specific goals like raising awareness and defining care gaps, showing moderate involvement.
ImpactModerate impact
The discussions highlight perceived impacts such as improving diagnosis and treatment, suggesting recognition of its significance.
Top posts
Most liked on X and Bluesky
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UCSF Fein Memory and Aging Center
@UCSFmac · X
Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy. A standard of care for this heterogeneous and under-diagnosed disease. Recommendations from the VCP Standards of Care Working Group. https://t.co/rGeMV34HTG
Mar 17, 2022 · 2 likes · 6,187 followersView post →
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UCSF Fein Memory and Aging Center
@UCSFmac · X
Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy. Consortium goals: raise awareness, expedite diagnosis, define gaps in care, initiate therapies, and elevate best practices guidelines. https://t.co/rGeMV34HTG
This podcast discusses creating a standard of care for patients with valosin-containing protein associated multisystem proteinopathy, based on peer-reviewed research, and highlights innovative use of AI tools to improve…
Dr. Manisha Korb discusses the development of a standard of care for VCP-associated multisystem proteinopathy, led by a multidisciplinary team. This milestone advances patient care and enhances medical understanding of…
@SpeakerSplit appreciative of your solution that helped me quickly create this educational #raredisease @CureVCPDisease video podcast generated from Notebook LM: https://t.co/VtyiMbFgwc
Saved me a ton of time so I could have both avatars on screen simultaneously! #vcpdisease
Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy. A standard of care for this heterogeneous and under-diagnosed disease. Recommendations from the VCP Standards of Care Working Group. https://t.co/rGeMV34HTG
Mar 17, 2022 · 2 likes · 6,187 followersView post →
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Neuromuscular Disease Network for Canada (NMD4C)
@NMD4Canada · X
Feb 10, 2022 · 1 like · 1,143 followersView post →
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UCSF Fein Memory and Aging Center
@UCSFmac · X
Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy. Consortium goals: raise awareness, expedite diagnosis, define gaps in care, initiate therapies, and elevate best practices guidelines. https://t.co/rGeMV34HTG
New article: Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy https://t.co/NSDaIkXsrt #parkinsons #neurology https://t.co/xGQtL1Gm4F
Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy https://t.co/aAShgUvxmk
Jan 30, 2022 · 1 like · 1,365 followersView post →
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VCP gene
News
doi: 10.1186/s13023-022-02172-5. Citation on PubMed (https://www .ncbi.nlm.nih.gov/pubmed/35093159). • Meyer H, Weihl CC. The VCP/p97 system at a glance ...
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