2020.05.06 – LuMind buduje bazę informacyjną dotyczacą koronawirusa i osób z ZD

Dostałem z USA informację prezentującą ideę budowania bazy danych na temat reakcji osób z ZD na koronawirusa, sytuację związaną z kwarantanną. Jeżeli chcecie pomóc tą ideę proszę o wypełnienie tego zestawu pytań https://redcap.emory.edu/surveys/?s=98DMP3CCN8

Dear  Jaroslaw,

The Trisomy 21 Research Society (T21RS), with the financial and dissemination support of Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group-USA (DSMIG-USA), GiGi’s Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, Matthew Foundation, National Down Syndrome Society (NDSS), National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and 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.

You are invited to complete this survey about the person with DS for whom you provide care and has tested positive or has symptoms of COVID-19. Completion of this survey is your choice.

None of the survey data will be linked to you or the person with DS. In other words, it will be anonymous.

The survey 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.

Link to survey: https://redcap.emory.edu/surveys/?s=98DMP3CCN8

We aim to release results every 2 weeks starting from the week of 18^th of May to ensure that the information can be available to families and clinicians as it becomes available.

Many thanks for your help with this.

Sincerely,

The LuMind IDSC Foundation