Pitt Hopkins Census

Current Count = 1,391

This question question comes up often and is a difficult to answer, but gathering this information is vital for research. Pharmaceutical companies are highly motivated to know this number and have asked us to help ascertain it. Parents and/or Legal Guardians, we are asking you to please take a couple of minutes and fill out this quick, easy and very important survey to help us get a more accurate census of diagnosed Pitt Hopkins patients worldwide.

Now available in multiple languages:

English: https://forms.gle/ESrUNeGNabby8bbK6

French: https://forms.gle/AeEFbdQsSSBUpoJ57

Portuguese: https://forms.gle/yvC5VnfSsAhbnLic7

Spanish: https://forms.gle/3ysjo6GAm9LoR7V4A

  • What’s the Pitt Hopkins CENSUS all about?

    Every quarter the Pitt Hopkins Research Foundation (PHRF) will tally up the newly diagnosed patients and come up with a global count. Today, the census stands at 1,391 patients.

  • Where does this number come from?

    This is the total number of people with Pitt Hopkins known to our research foundation and international family support groups worldwide. It’s not the number of people in the Pitt Hopkins registry. We have asked people to sign up, and we have imported from various lists we have obtained over the years such as email lists and conference registration lists. We are always looking for new patients. Please let us know if any of the numbers seem off to you! 

  • Why do we count the number of Pitt Hopkins patients?

    This number is incredibly important for Pitt Hopkins advocacy because it is crucial to give comfort to industry that we have enough patients to justify their investment into clinical trials and research.  It’s also crucial to recruit more people into Pitt Hopkins natural history studies such as our collaboration with Invitae. It’s also a benchmark of how highly we are  engaged with the patient population we represent. 

  • How else can Pitt Hopkins families help?

    First, please join the list by filling out the survey here. We urge everyone to reach out to the PHRF to make sure we have you counted. If your family member with PTHS is currently resident in any country where you can obtain medical records in English, we encourage you to participate in PHRF’s digital natural history study in partnership with Citizen/Invitae. 

    We also encourage every Pitt Hopkins family to sign up for our registry.



STATS

We know there are many more undiagnosed patients out there. We are working diligently on outreach. If you know of someone who is not on the internet or connected with the foundation, please invite them to get in touch! They can email us at information@pitthopkins.org.

Thank you for your help and dedication to advancing research for Pitt Hopkins syndrome!

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