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About the Registry

The need to gather together people with Sarcoidosis has been
understood for a long time. Doctors have often said that it is
difficult to find people to ask about their symptoms and their life
with Sarcoid. Thanks to the Internet and the growing number of
groups and doctors involved in studying Sarcoid, more and more
people are speaking out. As a result, it is being found that the
current data does not show the true statistics concerning the depth
of organ involvement in people with Sarcoid.

For instance, neurological involvement has been said to affect only 4-
6% of people. It has now been found that many more, perhaps up to
60%+, have numbness, tingling, pain, and electric-like shocks in their
legs, feet, arms, and hands. While this may be Small Fiber
Neuropathy, it is ignored by many medical personnel because it is not
a classic symptom of Sarcoid.

Many people with Sarcoid are told they are imagining symptoms or
that Sarcoid only affects the lungs. For many, their insurance won’t
pay for the medications they need because the medicine isn’t
normally prescribed for Sarcoid or the effects of Sarcoid are
minimized by health professionals and misunderstood by insurance
offices.
This registry has been developed to give people with Sarcoidosis a
place to tell what is happening to them. Every symptom will be given
a place. Quality of life will be examined. The effects of this disease
on health insurance and workability will be shown. Our goal is to have
this become an international registry. This disease is not isolated to
one country. We already have people interested in translating this
registry into many languages and we encourage anyone who is willing
to do so to contact us.

The results of this registry will be collected over time. Money will be
raised (see “Donations” page) to hire a researcher or team of
researchers to use what we are collecting to learn more about this
disease.
The Director of this registry has taken classes on HIPAA to ensure
that the respondent’s privacy is intact. Each respondent will be
assigned a number and all identifying information will be put on a non-
networked computer with extremely limited access. Every possible
means of keeping information private has been done. Each respondent
will be asked for updated information yearly to keep our registry up-
to-date. Each person will also be asked to choose one of three levels
of confidentiality to ensure that their wishes for privacy be
protected.
We are excited to have many distinguished and respected medical
experts working with us on this registry. Please visit the “About Us”
page to find out more.

You are encouraged to contact us with any questions you may have.
This registry has been created to serve the needs of people with
Sarcoidosis, those who care about them, and the medical people who
work so hard on our behalf.
We welcome you to this site and thank you so much for reading this
and for your participation.