TMS 2020 Mast Cell Disease COVID-19 Survey

Jun 17, 2020

The Mastocytosis Society, Inc. 2020 Patient Survey to Assess Impact of COVID-19 in Patients with Mast Cell Disease

 

This survey will remain open for the foreseeable future

You are invited to participate in a survey being conducted by Middle Tennessee State University (MTSU) researchers, in collaboration with The Mastocytosis Society, Inc. (TMS), designed to assess the impact of COVID-19 in patients with Mast Cell Disease. Data obtained from this survey will be used for discussion, investigation, presentation, and publications in medical journals to share knowledge gained about managing patients affected by both COVID-19 and pre-existing Mast Cell Disease. This survey is expected to take approximately 25 minutes to complete. The risk to you is no more than expected in daily life using the internet and there will be no compensation to you for your participation.  You may be offered the opportunity to opt in for future research studies by providing minimal contact information such as your name, phone number and email address. Providing contact information is optional and you may still participate in this survey even if you do not want to provide your contact information. Per MTSU Institutional Review Board (IRB) approval (#20-2172), your contact information may be shared with physician-investigators from the TMS Medical Advisory Board, for the purpose of follow-up research related to this and future studies. TMS will only receive de-identified (anonymous) survey data. Patient confidentiality is always our highest priority.

Adult patients and caregivers of adult and pediatric patients (under age 18) who have been diagnosed with Mast Cell Disease, including Mastocytosis, Mast Cell Activation Syndrome (MCAS), and Hereditary Alpha Tryptasemia (HaT), by any physician or clinic, may take this survey, regardless of whether or not there was any known exposure to COVID-19, whether or not they have had symptoms of COVID-19, and regardless of COVID-19 test results or COVID-19 diagnosis. (This expanded survey eligibility will allow researchers to better assess the impact of COVID-19 on our whole Mast Cell Disease community.) TMS encourages ALL Mast Cell Disease patients/their caregivers to take the survey. This survey will remain open as long as necessary to collect the data to give researchers a complete picture of the impact of COVID-19 in patients with Mast Cell Disease during this pandemic. At the end of the survey, you will have the opportunity to print or save a PDF file containing your responses.

PLEASE NOTE: If your experience with COVID-19 changes, you may retake the survey. The FIRST time you take this survey, you will be given a personal survey ID#. It is very important that you retain your FIRST survey ID# and keep it in a safe place. If you need to go back and retake the survey to update your information, entering your FIRST survey ID # is the only way we can connect your surveys and still retain your privacy.

If you would like to participate in this survey, please click on the following link:

https://mtsu.ca1.qualtrics.com/jfe/form/SV_brcBnsCk799CbUF

 

TMS appreciates the collaborative effort and expertise of members of the TMS Medical Advisory Board/Mast Cell Disease specialists, as well as scientists from Middle Tennessee State University, in the development of this survey.

For any questions, please contact: research@tmsforacure.org.

TMS 2020 Mast Cell Disease COVID-19 Survey Team:

Susan Jennings, PhD, Research Chair, research@tmsforacure.org

Angela Bowman, PhD (TMS Research Committee; Department of Health and Human Performance, Middle Tennessee State University, Murfreesboro, TN)

Valerie M. Slee, RN, BSN, Chair, chairman@tmsforacure.org

Celeste Finnerty, PhD, Research Committee

Jan Hempstead, RN, Patient Care Coordination Chair, nurses@tmsforacure.org

Barbara Ruby, MA, Advocacy Chair, advocacy@tmsforacure.org

Nicole Fox, MSN, RN, OCN, Education Chair, education@tmsforacure.org

The Mastocytosis Society, Inc.

www.tmsforacure.org