15q Clinical Research Network

Coronavirus Disease 2019 (COVID-19)

Questions and Answers (FAQs)

March 13, 2020

Due to quickly evolving information, recommendations may be subject to change and will be updated as needed.

The 15q Clinical Research Network has prepared these FAQs to address concerns from the Angelman/Dup15q Syndrome communities and healthcare professionals regarding the COVID-19 outbreak.  

For more comprehensive and up-to-date information refer to the Centers for Disease Control and Prevention (CDC) website.

SYMPTOMS OF COVID-19

The following symptoms may appear 2-14 days* after exposure to the virus:

  •   Cough
  •   Fever
  •   Shortness of breath

*Based on the previous incubation period associated with the Middle East respiratory syndrome (MERS)-related coronavirus.

RISKS OF ILLNESS

  1. Can I get sick by touching a surface or object that has the virus on it?
  •   According to the CDC, coronaviruses are generally thought to be spread from person-to-person through inhalation of respiratory droplets produced when an infected person coughs or sneezes.
  •   It may be possible for people to become ill by touching a surface or object that has the virus on it and then touching their own mouth, nose or eyes. Wash your hands often and try not to touch your face unless you have just washed your hands.
  1. Who is at higher risk for serious illness from COVID-19?
  •   Older adults
  •   People with a serious chronic medical condition such as:
  •   Diabetes
  •   Heart disease
  •   Lung disease (e.g. lymphangioleiomyomatosis [LAM])
  •   Hypertension
  •   Individuals on immunosuppressants (see below)
  1. What should people at higher risk of serious illness from COVID-19 do?
  •   The CDC recommends contacting your healthcare provider to ask about obtaining extra necessary medications** and supplies in case of an outbreak of COVID-19 in your local community, which may require you to stay home for a prolonged period. You may want to consider a mail-order vendor if you cannot obtain extra medication.
  •   Keep away from others who are sick.
  •   Avoid crowds.
  •   Wash hands often.
  •   If an outbreak occurs in your community (e.g. workplace, school, church), stay home as much as possible and follow any specific recommendations made by local authorities.

**FDA DRUG SHORTAGES: The 15q Clinical Research Network is not aware of any current seizure medication shortages caused by COVID-19.  Refer to the FDA Drug Shortage website for current information.

  1. Should I wear a facemask to prevent contracting COVID-19?
  • The CDC recommends the following

-People age 2 and older should wear masks in public settings and when around people who don’t live in their household.

-When you wear a mask, you protect others as well as yourself. Masks work best when everyone wears one.

-A mask is NOT a substitute for social distancing. Masks should still be worn in addition to staying at least 6 feet apart, especially when indoors around people who don’t live in your household.

-Wash your hands with soap and water for at least 20 seconds or use hand sanitizer with at least 60% alcohol after touching or removing your mask.

-Masks may not be necessary when you are outside by yourself away from others, or with other people who live in your household. However, some localities may have mask mandates while out in public, please check for the rules in your locality.

-CDC continues to study the effectiveness of different types of masks and update our recommendations as new scientific evidence becomes available. The most recent scientific brief is available here: Scientific Brief: Community Use of Cloth Masks to Control the Spread of SARS-CoV-2 | CDC 

  1. Is it safe for me or my loved one to go to work or school?
  •   If COVID-19 is spreading in your community, the CDC recommends “social distancing” or taking extra measures to put distance between yourself and other people. This may include staying home as much as possible and avoiding crowds, especially in poorly ventilated places.
  •   Contact your local school’s administration or your employer to see what steps they may be taking to keep students and/or staff healthy. For reference, see the CDC’s school and childcare guidance.
  1. Is it safe for me or my loved one to travel?
  •   Based on the CDC’s guidelines for preparing for and preventing COVID-19, individuals with high risk factors should consider rescheduling planned trips to areas affected by COVID-19, particularly those with level 2 travel notices.
  •   Avoid non-essential travel to destinations with level 3 travel notices because of the risk of contracting COVID-19.
  •   Please refer to the CDC and Johns Hopkins maps for the latest information on affected areas.
  1. Is it safe for me or my loved one to continue going to clinic appointments?
  •   We recommend maintaining regular clinical care. If you have questions or concerns about an upcoming clinic appointment or if you are in an area affected by COVID-19, we recommend contacting your provider that you have an appointment with for further instructions.  Dr. Jeste recommends that  patients be very mindful about avoiding any trips that they can.  If you have an upcoming clinic appointment or need a non-urgent appointment a Telehealth option maybe available, inquire with your treating clinic.
  •   Please refer to the CDC and Johns Hopkins maps for the latest information on affected areas.

Special thanks to the 15q Clinical Research Network physicians Dr. Elizabeth Berry-Kravis, Dr. Elizabeth Jalazo, Dr. Shafali Jeste and Dr. Ron Thibert for their reviews and contributions to the information in this document. We hope these answers are helpful to anyone caring for someone with Angelman or Dup15q syndrome.

Additional sources of information:

https://www.epilepsy.com/article/2020/3/concerns-about-coronavirus

RESOURCES AND REFERENCES

American Thoracic Society Patient Information Sheet

The CDC: Coronavirus Disease 2019 (COVID-19)

Johns Hopkins COVID-19 Global Cases Map

Cystic Fibrosis Foundation

Tuberous Sclerosis Alliance

Rett Syndrome Research Trust

 

FAQ with Dr. Elizabeth Berry-Kraviz (Rush Medical Center, 15q Clinical Research Network)

Q :   At the moment there appears to be some evidence that the average age of those affected most seriously by COVID-19, is from 49-56. Are you aware of any evidence as to why children don’t seem to be as badly affected and would this logically include all children regardless of underlying health issues?

A: Most of the deaths are in people over 60 with a steep rise in those over 80. These people often have multiple medical problems. There is information from Child neurologists in Italy that even severely neurologically impaired children did not have big seizure exacerbations or get really sick, even when documented to have COVID19, kids seem to get it less and have milder cases.

 

Q: Based on what we already know, do you expect the virus to more negatively impact children with Angelman or Dup15q Syndrome and related disorders than the general population?

A: I would not expect that, although seizure exacerbations can always be an issue when patients get a virus.

 

Q: What can parents and carers do to decrease risk for the person they are looking after, if they themselves become infected and still have to care for their child or adult with Angelman or Dup15q Syndrome?

A: The standard hygiene things, like hand washing. 

 

CDC recommendations on handwashing can be found here https://www.cdc.gov/handwashing/when-how-handwashing.html

 

Q:  It might just be easier to work on prevention! Obviously, there is a lot of talk about hand washing. Is there anything else we can do to decrease the risk of transmission?

A:  Hand washing is big, not going near people who have fever or cough or URI symptoms, not being in closed environments with a lot of people like on the train or subway.

 

Q: Are masks any use whatsoever?

A:  Masks help prevent you from transmitting the condition to others but not useful to keep you from getting it.