The FamilieSCN2a Foundation has partnered with Simons VIP to assist us in collecting clinical, developmental and other medical information and maintaining a detailed database that will be available to interested researchers.
A respectable, clinician-derived, database is critical for researchers to access information on SCN2a cases. The information will be held in one place and identity protected.
There were many options on where to host our database. Below is a list of unique and exciting factors that made Simons VIP stand out:
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Simons VIP partners with an international bio-bank to collect blood samples in the comfort of your home - and not just in the USA. The bio-bank makes it possible for researchers with a valid IRB to access the samples without having to re-draw our children.
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Their surveys are very detailed and strategically created by geneticists, physicians and other clinicians.
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We, the families, can request specific information be added to surveys such as; "how many children are left handed" or how many of the kids have respiratory issues" and the list goes on.
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We, the families, will have access to some of the data via the Simons VIP website.
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Simons VIP will assist us in recruiting efforts to find the families that we all know are out there who have been diagnosed and are probably feeling like we all did at one point - alone.
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Simons VIP is VERY interested in SCN2a - and we all know, interest in rare diseases is the first step to getting more research.
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Simons VIP has large pharmaceutical companies that contact them regularly looking for data on SCN2a.
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The team at Simons VIP spent countless hours on the phone and email with the FamilieSCN2a board members negotiating our agreement and we feel strongly that this will bring much leverage to SCN2a.
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Simons VIP offers financial incentives to encourage participation.
Three of the FamilieSCN2a board members have gone through entire process to "test" it and we made a few changes and suggestions. EVERYONE'S opinion matters, so please send us your feedback and we will speak with Simons VIP about it right away.
**Please take a few minutes to check out their website and register with the Simons VIP Community and Research at the same time. Mention you are with the FamilieSCN2a Foundation. This will be beneficial to our children and lead towards finding a cure.**