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Covid-19 resources 

DSMIG-USA - Intellectual and Developmental Disability COVID-19 Vaccination Position Statement

Updated -May, 2021

Summary

  • We agree with the CDC recommendations that the COVID-19 vaccines are appropriate and recommended for most people. The vaccine may not be appropriate for people with severe allergies.
  • People with Down syndrome, particularly those over 40 years of age and people less than 40 years of age with risk factors, are more susceptible to complications from COVID-19 infection.
  • These vaccines specifically and messenger RNA vaccines in general have not been studied in people with Down syndrome or other intellectual disabilities. This is often the case for other vaccines, medications, and supplements.
  • Since there is a lack of data regarding the benefits and risks of the COVID-19 vaccines for people with Down syndrome and other intellectual disabilities, this recommendation is based on the results of vaccine testing for people without Down syndrome or another intellectual disability. The disproportionate effect of the pandemic on this population was also considered.
  • Previous vaccines that also trigger the immune system (albeit with different technology) have not had significantly different side effects for people with Down syndrome or other intellectual disabilities.
  • Studies indicate the vaccine is a safe path to reduce symptomatic COVID-19, save lives, and aid in a more rapid return to the many aspects of our lives that have been altered.
Download the full PDF of the statement in English here          Download the full PDF of the statement in Spanish here

DSMIG-USADSMIG-USA Response to Centers for Disease Control Mask Recommendations

Updated -May, 2021

Until we have more data, here are some considerations based on the CDC guidelines:

  • You can still wear a mask. It’s never wrong to be more cautious. While masks may not be required, ultimately, wearing masks is a personal decision based on factors such as your comfort with risk, the rate of infection in your community, and the risk of potentially bringing home the virus (especially if someone in the home is at increased risk for severe illness from COVID-19). We still recommend some caution. The data we have so far on COVID-19 infection in people with DS, indicate that those over age 40 and those with certain risk factors are at increased risk for severe illness from COVID-19.
  • Small gatherings. Per the CDC guidelines, families who have all been fully vaccinated, can hold small outdoor or indoor family gatherings, without wearing masks. These gatherings can include families from multiple households if everyone is fully vaccinated. The risk of infection seems to be quite low in that situation. We recommend caution as those gatherings get larger and the knowledge of the behavior and vaccination status of the participants decreases, particularly for people with DS with risk factors that put them at increased risk for severe illness from COVID-19.
  • Larger public places. Larger public places include concerts and sporting events as well as crowded stores and other congregate settings, especially those that are indoors. We recommend caution until we know more about the effectiveness of COVID-19 vaccines in people with DS. We recommend considering wearing a mask, performing hand hygiene, and practicing physical distancing as much as possible when in those settings. Others may decide that avoiding those settings altogether is prudent until we know more.
  • Work, school and activities. Prior to the changes in the CDC’s mask guidelines but after receiving COVID-19 vaccines, quite a few individuals with DS safely went back to work, school, and/or activities. The physical and mental health benefits of returning to work, school, and activities are significant. Even though the CDC has made changes to the mask guidelines, you may want to continue wearing masks and practicing physical distancing depending on factors such as the type of job or activity and the vaccination status of others at the job or activity. Businesses, schools and organizations may also continue to enforce a mask requirement.

Download the full PDF statement in English here          Download the full PDF statement in Spanish here

Supported by:



UPDATED 9/21: National Consortium Covid-19 Down Syndrome Resource

IMPORTANT NEWS! DSMIG-USA joins forces with other nationals to create a valuable, free COVID-19 & Down Syndrome Resource for individuals with #downsyndrome and their families. This Resource focuses on new and updated information specific to testing, vaccines, mental health, ways to stay safe, and advocacy in hospital settings and for appropriate care. The unprecedented spread of #covid19 presents the world with a unique challenge and calls for this united response and Resource. Please READ & SHARE to help save lives:

 ENGLISH

     



JOINT Position statement regarding covid-19 vaccine

The development of a safe, effective vaccine is a critical component of the global response to the coronavirus disease 2019 (COVID-19) pandemic. Vaccine distribution and allocation must be done in a safe and equitable manner, and individuals with intellectual and developmental disabilities (IDD) must be explicitly addressed in any framework for vaccine allocation. The aim of this joint position statement is to address the risks facing people with IDD during the pandemic and to recommend how they should be included in vaccine allocation frameworks. Click here to download the statement.


Help us learn more about COVID-19 among people with Down syndrome

The Trisomy 21 Research Society (T21RS), with the endorsement of many international Down syndrome organizations, is collecting vital information to understand the risks and course of COVID-19 among people with Down syndrome (DS). The goal is to learn if people with DS are more vulnerable or have a different course of illness related COVID-19 and if their illness is related to their pre-existing health profile. We hope that this information will help identify who is at the greatest risk and how to better protect them.

If the person with DS for whom you provide care has tested positive or has symptoms of COVID-19, we invite you to complete this survey.  It will take about 10-20 minutes to complete. It asks for: 1) general information about the person with DS, 2) their pre-existing conditions, 3) whether they were tested for COVID-19, 4) COVID-19 symptoms and 5) treatments and outcome.

None of the survey data will be linked to you or the person with DS. In other words, it will be anonymous. You might receive this request to complete the survey many times. Please only complete the survey once for each person with DS for whom you care.

Please click on the link below to start the Clinician Survey:

Clinician Survey in English                Clinician Survey in Spanish 


OTHER NEWS

  • 08 Jan 2020 3:09 PM | Anonymous member (Administrator)
    • Notice of Special Interest: Ruth L. Kirschstein National Research Service Award (NRSA) Fellowship Awards to Support Training in Research Related to Down Syndrome as Part of the INCLUDE Project (NOT-OD-20-020)
    • Notice of Special Interest: Mentored Career Development Awards to Foster the Careers of Investigators Pursuing Research Related to Down syndrome as Part of the INCLUDE Project (NOT-OD-20-021)
    • Small Research Grants for Analyses of Down Syndrome-related Research Data for the INCLUDE Project (R03 Clinical Trial Not Allowed) (RFA-OD-20-006)


  • 01 Nov 2018 11:06 AM | Anonymous member (Administrator)


    LuMind Research Down Syndrome Foundation Launches the Down Syndrome Clinical Trials Network. $3M initial commitment from Alana Foundation, H. Lundbeck A/S and AC Immune SA

    https://www.lumindrds.org/ds-ctn/

     

     

  • 29 Oct 2018 10:03 AM | Anonymous member (Administrator)

     George Capone, MD and Brian Chicoine, MD presented a webinar on 9/18/2018 sponsored by LuMind Research Down Syndrome Foundation: Understanding a sudden loss of skills in children or young adults with Down syndrome. You may wish to view this yourself or recommend it to parents of your patients

    The webinar can be viewed at https://lumindfnd.webex.com/lumindfnd/lsr.php?RCID=c018fe090a4b4ea3ac563031df439369

    The webinar is one hour 53 minutes in length and includes opening remarks from Hampus Hilstrom, President and CEO of LuMind RDS Foundation followed by presentations from George and Brian. George’s presentation focused primarily on regression among children with DS and Brian’s presentation addressed the phenomenon among adults with DS.

     

  • 21 Jun 2018 9:20 AM | Anonymous member (Administrator)

     The INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project was launched in June 2018 in support of a Congressional directive in the fiscal year (FY) 2018 Omnibus Appropriations. The directive calls for a new trans-NIH research initiative on critical health and quality-of-life needs for individuals with Down syndrome. NIH is dedicating $21 million for INCLUDE research, bolstering total funding for Down syndrome research in FY2018 to an estimated $58 million, with further support anticipated in FY2019 and beyond, pending availability of funds.

    Visit:  https://www.nih.gov/include-project

  • 25 Oct 2017 11:28 AM | Anonymous member (Administrator)

    See the landmark testimony from today's congressional hearing on Down Syndrome biomedical research

    Link: http://appropriations.house.gov/calendar/eventsingle.aspx?EventID=395058 



  • 03 May 2017 12:39 PM | Anonymous member (Administrator)

    Recently Published in  AJIDD.

    2017 May;122(3):247-281. doi: 10.1352/1944-7558-122.3.247

  • 28 Jun 2016 5:15 PM | Anonymous member (Administrator)

     This phase II study did not meet its primary and secondary endpoints on improvement in cognition and function

    Roche statement: http://www.roche.com/media/store/statements.htm

    LuMind statement1: https://www.lumindrds.org/response-on-the-roche-clinical-trial-for-clematis/

    LuMind statement2: https://www.lumindrds.org/statement-from-lumind-research-down-syndrome-foundation-on-the-roche-clinical-trials/



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