IPWSO Announces Early Results of COVID-19 Survey, Seeks More Participants

IPWSO Announces Early Results of COVID-19 Survey, Seeks More Participants
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The International Prader-Willi Syndrome Organisation (IPWSO) is seeking more responses to its COVID-19 survey evaluating the virus’ potential risks for people with Prader-Willi syndrome (PWS).

The survey seeks to answer whether PWS patients might be at higher risk for infection, serious illness, and poor outcomes. Such concern followed reports showing that obesity, diabetes, and respiratory disorders — all common in people with PWS — are associated with more severe courses of COVID-19.

The results from the first 16 participants, 15 of whom provided full responses, suggest an overall low rate of infection among this population. However, the IPWSO doubts this conclusion, given reports heard by organization officials of cases in many countries.

“We need much more information to understand whether or not people with PWS are at high risk from coronavirus and importantly whether or not the illness is diagnosed late because the presentation is atypical,” Tony Holland, on behalf of IPWSO as its president, wrote in a news story from the organization.

The current data report on people between the ages of 2 and 50. The respondents were generally in good health, with low rates of other disorders, such as diabetes. Less than half of the participants were obese, as assessed by body mass index, and only one person was severely obese.

Nine participants reported having had COVID-19 infections confirmed by testing. Six had mild infections, lasting under a week. Two others reported mild infections as well, but lasting two weeks. Five respondents reported moderate-to-severe illness, lasting for more than two weeks. The remaining person described having had severe illness.

One respondent, who had sleep apnea, reported needing oxygen. Despite being seen at a hospital due to concerns over low oxygen levels, no admission was needed and recovery was achieved in one week.

No other respondent was admitted to a hospital and all patients remained living in their homes.

The most common presenting complications were headaches, generally feeling unwell, and an increased temperature.

Still, the low number of responses, and the fact that most appear to come from people in generally good health, make it impossible to draw firm conclusions regarding the effects of COVID-19 among the PWS community, Holland said.

“So far in this survey no one has been reported to have been hospitalised for COVID-19 — is this true for everyone?” he asked.

Other questions that arise from the responses include whether people with PWS have normal access to testing, as suggested by the current responses. In addition, Holland noted that one reported serious COVID-19 case was diagnosed in a child. He said this was surprising, “as children do better than adults.”

“How have other children with PWS been affected by COVID-19?” Holland asked.

Finally, one respondent voiced concerns that having PWS might put up a barrier to obtaining good care. Whether others with PWS share similar concerns needs more answers, he said.

In addition, more responses will help the IPWSO and patient advocates to better understand how obesity, diabetes, and respiratory problems such as sleep apnea affect people with PWS who are diagnosed with COVID-19.

Holland said that responses from a family member or a carer are particularly important if a person with PWS has died from COVID-19. The information collected in the survey may help others by shedding more light on such cases.

The survey can be found here and is available in English, French, German, and Spanish.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
Total Posts: 12

José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.

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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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