Where Care Meets Cure:
The Growth of Rett Clinics - UPDATE

November 7, 2014 (Update to our August 4th Post)

Rettsyndrome.org is committed to cultivating NETWORKED centers; our successes in this field means that we are regularly asked to consult on how to bring this clinic model to more cities in the U.S., and to more countries around the world. To find out more about our clinics and how they help, please read on.

In the early 2000’s there were only a handful of expert Rett centers in the US. Currently there are 22 Rett specialty centers at reputable hospitals and medical centers across North America that have dedicated themselves to understanding Rett syndrome. 

11 of these centers are also approved data collection sites for the Natural History Study and once enrollment opens they can enroll your child. These centers will also be seeing children and adults with Rett syndrome, MECP2 Duplication disorder, CDKL5 disorder and FOXG1 syndrome.

What is the purpose of these clinics?

As a foundation, we aim to close the gap in clinical research and care in two ways:

  • Grow the network 
  • Empower families

What do we mean by Grow the Network?

Essentially to get more Expert Physicians and Clinicians who in turn will educate their peers about Rett syndrome.

How do we want to Empower Families? 

By identifying good practices for their children and in engage families in clinical research and trials through family conferences and webinars. Clinical trials are listed at www.clinicaltrials.gov

We are growing the Rett Clinic Network:

  • to encourage dialog
  • to reach consensus on current treatments
  • to deepen collaborative relationships
  • to challenge standards of care
  • to inspire clinical research 

The purpose of this network is to collaborate, inspire and ignite their passion and interests, as well as impressing the fact that they are not isolated, but have each other for cross-pollinating ideas. This also primes and prepares them as Translational Research reaches the clinics (our children!).

Here are some topics we have discussed in the network:

  • seizures
  • cardiac
  • dystonia
  • irregular sleep patterns
  • irritability
  • breathing issues
  • regression
  • diagnostic criteria changes
  • Parkinsonism

A consortium led by Dr. Alan Percy is investigating the longitudinal natural history and neuro-behavioral assessments, biomarkers, outcome measures, and neurophysiological and neuroimaging correlates of disease severity in Rett syndrome, MECP2 Duplication disorder, CDKL5 disorder, and FOXG1 syndrome.

This is made possible by the newly awarded NIH ORDR-NCATS RDCRN U54 Cooperative Agreement under the direction of Rashmi Gopal-Srivastava, Director, Extramural Research Program, ORDR, NCATS.

Rettsyndrome.org is focused on bringing these two very important Networks together: the family network and the peer network.  We are making sure that every detail, no matter how small, gets coverage.

In Rett syndrome, the little things are the big things.

Better treatments, interventions and a cure will happen because when you bring a group of passionate people together who care about one thing, the health of our children, amazing things happen. There are caring doctors and researchers everywhere working on Rett syndrome, and even more just waiting to be recruited!

The outcome for our children with Rett syndrome is improving with time: greater life expectancy and improved overall health. Rettsyndrome.org absolutely believes that clinician focus and family empowerment are the essential ingredients that have resulted in this progress, and we want more of it.

Let us know your thoughts on this subject.  If you want to open a clinic, reach out to us and we’ll talk.  If you want to find the nearest clinic to you, visit us here:  www.rettsyndrome.org/for-families/clinics.

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