New Survey to Capture MWS Growth Data


As of March 1, 2018, the Mowat-Wilson Syndrome registry has over 133 participants involved at varying levels with the three current surveys. With the launch of the Growth Data survey we hope to be able to provide the valuable information necessary for the development of Mowat-Wilson Syndrome specific growth charts.

Here are some comments from Dr. Margaret Adam about the Growth Data Survey:

“Individuals with Mowat-Wilson syndrome (MWS) frequently are small compared to other people their age. This means that when a provider tries to plot that person’s growth (weight, length/height, and head circumference) on typical growth charts, the person with MWS appears to be small. Sometimes the person seems very small or the person’s growth is not on the typical growth chart at all. When a person’s weight is below what is expected for age, physicians often become concerned that the person is not getting enough calories, and this can sometimes lead to unnecessary procedures, such as placing a feeding tube when a feeding tube is not needed.

For this reason, we hope to develop growth charts that are specific to individuals with MWS. Our goal is for these growth charts to be available for people of all ages and include weight, length/height, and head circumference. This will allow families and providers to know if the person with MWS is growing as expected. If, indeed, the person is not growing as well as expected for a person with MWS, then the provider could appropriately recommend treatment for the growth issues.

To make this project successful, we need to be able to collect information on growth from many people and over a range of ages, from birth to adulthood. Many families will be able to get this information from their primary care provider, since growth is measured at most doctor visits. We hope to be able to provide families and providers with this important information so that growth can be monitored appropriately.”

In order to share your child’s growth data you may need to contact the healthcare providers to request the information. Feel free to download the letter from the MWS Foundation explaining the reason for the request.  Once you have the data follow these steps:

  1. If you are already participating in the registry, you just need to sign in to access the surveys. If you have completed Survey #1 – Baseline Information, you will then be able to proceed directly to Survey #4 – Growth Data. It is not necessary to complete surveys 2 & 3 first.
  2. For those new to the registry, you will be required to complete an initial registration, establish your privacy settings and complete Survey #1 – Baseline Information before having access to complete the Growth Data Survey.

Click here to go to the MWS Registry to share your data

Your willingness to share data is vital to research and to gaining new knowledge about MWS. Because we don’t know what’s possible…


Full Press Release


Mowat-Wilson Syndrome Patient Registry Update – February 2017

The Mowat-Wilson Syndrome Foundation is pleased to report on the significant progress being made with the Mowat-Wilson Syndrome Patient Registry.  The registry was launched back in November, 2016.  Here is what Dr. Margaret Adam said at the time.

“As is true for many rare genetic conditions, our ability to collect clinically relevant information that can help physicians provide excellent patient care is limited because each provider has only a small number of patients with the condition. Therefore, to further our knowledge of the breadth of the condition requires engagement of the involved community and a platform in which information can be securely and accurately entered and curated. This in turn will allow expert clinical researchers to extract important information and identify rare complications that will aid physicians who care for individuals with MWS.”

A recap of the participation data through January 31, 2017 shows:

  • 64 Registrations
  • 50 Background surveys completed and 6 in progress
  • 47 Maternal Information surveys completed
  • 24 Genetic Information surveys completed and 20 in progress
  • Information shared from individuals in 11 different countries

The MWS Foundation wants to extend a big “thank you” to those who have gotten involved in the process of sharing their data.  We also want to ask that if you have started the process but have not completed any of the first 3 surveys to please do so.  Our plan is to begin adding additional, condition specific, surveys with the next few months.  The first 2 of those additional surveys will be for Gastrointestinal issues and seizures.

We encourage you to start the process by reading the Registry FAQs. If you are ready to start sharing your data, click here.

If you have not yet begun the process, we ask that you please consider getting involved by sharing your data…Because we don’t know what’s possible.

Contact Information:

Al Triunfo
Director, Mowat-Wilson Syndrome Foundation
(678) 357-5523