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eLetter #858 | March 27, 2020  

 Rod of Asclepius Medical Symbol

 

Important Information Related to COVID-19 and Juvenile Scleroderma

To address questions related to juvenile localized scleroderma and COVID-19 (coronavirus), including advice on immunosuppressant therapies, pediatric rheumatologist and juvenile scleroderma expert Kathryn Torok, M.D., Children's Hospital of Pittsburgh, provides guidance to families in a statement approved by the Scleroderma Foundation's Medical & Scientific Advisory Board's Leadership Committee.

Dr. Torok's statement includes a reference to guidance from PRES (Pediatric Rheumatology European Society) on juvenile scleroderma and COVID-19, which is agreed to by the US pediatric rheumatology community.

COVID-19 & Juvenile Scleroderma

 COVID-19 Molecule CDC

 

Spanish Language Version of COVID-19 Statement

A Spanish language version of the COVID-19 statement from the Foundation's Medical & Scientific Advisory Board's Leadership Committee has been posted online. March 20 was the date of the original advisory to individuals with systemic scleroderma advising them to self-isolate at home for 15 days. 

Spanish Language COVID-19 Statement

Rod of Asclepius Medical Symbol

 

Updated COVID-19 Statement from the Scleroderma Foundation's Medical & Scientific Advisory Board Leadership Committee

Please check the Scleroderma Foundation's COVID-19 web page for an updated statement from our Medical & Scientific Advisory Board's Leadership Committee.

This statement is a "living document" that will be updated as new information becomes available.  Please remember to check it from time to time.

COVID-19 Statement

SPIN COVID-19 Video eLetter 

 

Video Recording of March 21 Video Forum on COVID-19 & Scleroderma

Watch the recording of that March 21 video forum with five scleroderma experts about COVID-19 and its impact on individuals who have scleroderma.

  • Maureen Sauvé: SPIN Patient Advisory Board and Steering Committee.
  • Dr. Janet Pope: Western University, London, Ontario
  • Dr. John Varga: Northwestern University Scleroderma Program, Chicago, Illinois
  • Dr. Donald Sheppard: McGill University, Montreal, Quebec
  • Dr. Brett Thombs: McGill University, Montreal, Quebec; SPIN

Presented by SPIN (Scleroderma Patient-centered Intervention Network) in sponsorship with the Scleroderma Society of Ontario, Scleroderma Canada, the Scleroderma Research Foundation, and the Scleroderma Foundation.

VIDEO

Dr. Shervin Assassi

 

Lung Involvement in Scleroderma & COVID-19

Watch a recording of the March 25 webinar presented by Shervin Assassi, M.D., University of Texas Health Science Center at Houston, on lung involvement in scleroderma as it relates to COVID-19. The webinar was part of Scleroderma Week at the American Thoracic Society (ATS) in conjunction with the Scleroderma Foundation, which is a Public Advisory Roundtable (PAR) partner.

VIDEO

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SPIN Invites Individuals with Scleroderma to Share COVID-19 Concerns

SPIN (Scleroderma Patient-centered Intervention Network) is building a tool to measure and evaluate fears that may be experienced by people in the scleroderma community during the current COVID-19 crisis. SPIN wants to hear from you with suggestions for items to include in the measurement tool. To help with this, you are invited to list any fears you are experiencing using the survey linked below.  Thank you.

SURVEY

Sundar Balasubramanian

 

STaY Breathing!

Scleroderma Telehealth Yoga Breathing (STaY Breathing!) is the telehealth version of our ongoing Gentle Yoga and Yogic Breathing (GYYB) program for scleroderma patients. In the current environment of COVID-19 it is important to minimize exposure, which is especially relevant to those who have scleroderma. At the same time, keeping up with good exercise is the key to better health and symptom management. With this in mind, Dr. Sundar Balasubramanian is transforming the GYYB program into the telehealth mode so participants can join and practice from their homes. At this point, attendance is restricted to individuals with scleroderma. There is no charge to join. Voluntary donations will be accepted.

You can choose to attend or more webinars on the following dates, all at 11 a.m. Eastern Time:

  • March 28
  • April 4
  • April 11
  • April 18
  • April 25
  • May 2
  • May 9
  • May 16

WEBINAR

Ohio Sunday Sit Down 

 

Sunday Sitdown

Facebook Live: March 29, 1 p.m. Eastern Time

Join the Ohio Chapter for Sunday Sitdowns on the last Sunday of every month at 1 p.m. Eastern Time via Facebook Live. This is a time to connect with others who live with the challenges caused by scleroderma.

Please note, given the open, unsecure nature of Facebook, do not share private, personal information during this conversation.

SUNDAY SITDOWN


myPHteam man-older-breathing-chest-lungs

 

myPHteam

"Does anyone else get extremely short of breath and experience pain when you bend over?"

View or share an answer to this question here:

myPHteam

Clinical Trial Opportunity

Safety and Tolerability Study of AVID200, a Novel TGF-beta 1 & 3 Inhibitor, in Patients with Diffuse Cutaneous Systemic Sclerosis

Several lines of evidence place TGF-β, a potent pro-fibrotic cytokine, at the center of the pathogenesis of systemic sclerosis (SSc). AVID200 is a novel inhibitor of TGF-β ligands.

AVID200-01 (NCT03831438)is a Phase 1 trial designed to evaluate the safety, tolerability, and preliminary efficacy of AVID200 in diffuse cutaneous systemic sclerosis (dcSSc) patients. Currently the trial is being conducted at four centers in the United States: University of Pittsburgh Medical Center, Hospital for Special Surgery, UCLA, and University of Pennsylvania, with more centers expected to be open soon.

To participate in the trial, the following minimum criteria must be met:

  • Be at least 18 years old
  • Be classified as having SSc with a total ≥ 9 according to the American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) criteria for the classification of SSc
  • Have diffuse cutaneous SSc (dcSSc) subset
  • Disease duration < 5 years since the onset of first SSc manifestations (other than Raynaud's phenomenon) at the time of enrollment
  • Have a MRSS ≥ 15, and with a score that has not decreased by > 5 points in the past 2 months (8 weeks)
  • Have a skin score ≥ 2 on at least one forearm
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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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