oin the ConnectMPS registry to help move research at its fastest pace!
Your health information can add to what is known about how MPS and Mucolipidosis (ML) affect lives, and can move us closer to promising treatments. This data is so vital to research and treatment discovery that numerous advocacy organizations, each working for MPS-related diseases in their own ways, have united to create this collaborative program.
ConnectMPS is fully compliant with the new European Union General Data Protection Regulation (GDPR), which became law on May 25, 2018.
##READMORE##To build on this momentum, this collaborative registry unites families and advocacy efforts to make de-identified data on MPS related diseases available to researchers and companies worldwide. Researchers and drug developers alike can better understand the progression of MPS and ML, accessible through a central, openly-accessible portal. Participants can receive information about the upcoming clinical trials most relevant to them.
In the past few years, there have been encouraging academic research and clinical trials in MPS and ML. This progress is because disease advocates work hard to fund research while families worked to amplify the voice of the patient by entering this registry. You can help build on these successes too. Help us provide as much data as possible on all MPS & ML diseases, as quickly as possible, to scientists worldwide!
Join if you have one of the following:
Download our patient flyer here.
This registry is a collaboration between leading MPS and Mucolipidosis (ML) organizations around the globe. Launched in 2014 with two advocacy organizations, this registry quickly expanded to 22 international advocacy groups by early 2016. In the summer of 2016, through a partnership with the National MPS Society, the ConnectMPS registry was rebranded to become a centralized, comprehensive global database that connects all stakeholders in the MPS and ML communities.
By coming together, we demonstrate our unity towards discovery of a cure and to offer researchers and industry the most efficient, uniform source for patient data to advance treatments.
Join us today!
Take health surveys and learn about the experiences of others living with MPS. See how your health information fits into the larger picture of the MPS experience around the globe. Receive notice of clinical trials and research studies, as well as the latest news in MPS research.
Explore the ConnectMPS Partner Organization Directory. Questions? Please contact us via email.
NOW AVAILABLE
PATIENT ACCESS TO INVITAE'S GENETIC TESTING
Patients and families can now order the same genetic tests used by experts. Our easy-to-use, online experience offers guidance throughout the process from well-established, independent telemedicine providers.
This link is for informational purposes. PIN participants may access genetic testing through whichever lab and/or provider they feel most comfortable
Partner organizations
oin the ConnectMPS registry to help move research at its fastest pace!
Your health information can add to what is known about how MPS and Mucolipidosis (ML) affect lives, and can move us closer to promising treatments. This data is so vital to research and treatment discovery that numerous advocacy organizations, each working for MPS-related diseases in their own ways, have united to create this collaborative program.
ConnectMPS is fully compliant with the new European Union General Data Protection Regulation (GDPR), which became law on May 25, 2018.
##READMORE##To build on this momentum, this collaborative registry unites families and advocacy efforts to make de-identified data on MPS related diseases available to researchers and companies worldwide. Researchers and drug developers alike can better understand the progression of MPS and ML, accessible through a central, openly-accessible portal. Participants can receive information about the upcoming clinical trials most relevant to them.
In the past few years, there have been encouraging academic research and clinical trials in MPS and ML. This progress is because disease advocates work hard to fund research while families worked to amplify the voice of the patient by entering this registry. You can help build on these successes too. Help us provide as much data as possible on all MPS & ML diseases, as quickly as possible, to scientists worldwide!
Join if you have one of the following:
Download our patient flyer here.
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