| Welcome to the Sarcoidosis Registry |
About the Registry
As some of you know, we have been in pursuit of a way to make
this a truly international registry; however it has been difficult to
find a way to make it translatable to all languages. Now, thanks
to a friend who was diligent in searching, I have been told of a
translation tool in Google. Some may say, "well, I knew about
that!" but it's new to us!
So, for those of you who need this website translated, please go
to www.google.com/language_tools You can type our URL (web
address) into the box on top and click on 'language'. A drop-down
menu of many languages will open. Simply click on your language
and click on 'search' and a link to the website in your language
will appear! It's an amazing use of technology.
I am very excited to be able to share this and I look forward to
a more fulfilling involvement from our Sarcoid friends around the
world. Thank you all for your participation and caring.
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.
As some of you know, we have been in pursuit of a way to make
this a truly international registry; however it has been difficult to
find a way to make it translatable to all languages. Now, thanks
to a friend who was diligent in searching, I have been told of a
translation tool in Google. Some may say, "well, I knew about
that!" but it's new to us!
So, for those of you who need this website translated, please go
to www.google.com/language_tools You can type our URL (web
address) into the box on top and click on 'language'. A drop-down
menu of many languages will open. Simply click on your language
and click on 'search' and a link to the website in your language
will appear! It's an amazing use of technology.
I am very excited to be able to share this and I look forward to
a more fulfilling involvement from our Sarcoid friends around the
world. Thank you all for your participation and caring.
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.
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Sarcoid Registry Director,
Kristi Anderson
Kristi Anderson