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DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
IH.CONNECT Patient Registry
There’s power in numbers. Help us build our patient registry.
We have launched an important new initiative: a patient registry for Idiopathic Intracranial Hypertension (IIH). Patient registries are important for a number of reasons, including:
They help promote improved diagnosis and medical care among families and healthcare providers, and to reach families who are not connected to specialty care providers
They help researchers characterize and understand the global patient community; gain access to data for pre-clinical and clinical research; and link families with research opportunities
They help pharmaceutical companies connect with researchers and patients to conduct pre-clinical and clinical trials
They help empower patients and families through valuable knowledge, direct rapid contact, and identification of important concerns
They help patients and their families find answers to common questions about IIH] learn about genetics, inheritance, and genetic testing; and explore up-to-date information about medical research and clinical trials
Joining the IH.Connect registry means your medical information – de-identified, so it doesn’t contain your name, date of birth, or other identifying data – can be added to information from other IIH patients. You retain ownership of your data, and you decide whether to opt in – or opt out – of the registry. You also can be informed of research opportunities that can help advance understanding of IIH and its management.
The I Have IIH Foundation is able to operate our registry thanks to the professionals at PatientCrossroads, the leading manager of patient registries worldwide. We are very excited about this opportunity, and we hope you will consider joining the IH.Connect registry. Knowledge is power, and the more that we all know about IIH, the more powerful the results can be.
This Registry does NOT replace the IH Research Foundation IH Registry, that is extremely important and valuable to research. One of the key aims of our registry, is so that whatever country, city or region you're from, you WILL BE able to find an IH Specialist near you. That is why THIS Registry is extremely important to us, and the information you provide will go a long way in terms of the above listed reasons to join.
Join Now! Give the global IIH patient community the gift of your participation - make your medical information count!
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