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Covid-19 resources 

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 

National Consortium Creates Important Covid-19/Down Syndrome Resource

The unprecedented spread of Coronavirus (COVID-19) presents the world with a unique challenge and calls for a united response to better understand its impact on the Down syndrome community. Down Syndrome Medical Interest Group-USA (DSMIG-USA) is proud to collaborate with Global Down Syndrome Foundation (GLOBAL) , LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and Down syndrome medical experts to publish a new resource.

IMPORTANT UPDATED DS/COVID-19 Q&A! New links and info on going back to school/work/programs & more. DSMIG-USA is proud to support GLOBAL & the national consortium.

Read and share the Q&A here: DS & COVID-19 Q&A


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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