Sarcoidosis Registry
"The Questions"
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Name: _________________________________________Date:____________
Address:
_______________________________________________________________
Street City State Zip
Phone:
_________________________________________________________________
Home Work Cell
Email:
_________________________________________________________________
Age: ________________ Gender: M ____F ______ Marital Status:____________
Your doctor’s name, address, and phone number: (If you have multiple doctors,
please use the back of this page to add them)
_________________________________________________________________
_________________________________________________________________
_________________________________________________________________
___________________
Do we have your permission to contact your doctor? Yes _________ No ______
For each doctor, please tell us the date you began seeing them and the date of
the last visit:
__________________________________________________________
_________________________________________________________________
_____________________
Below you will find the questions of the registry. Please mail to:
Sarcoid Registry
PO Box 699; Roseburg, Oregon, 97470.
If you are not sure about any of the answers, you may want to contact your doctor
or family members. The more accurate and detailed the information, the more
help it will be. At the end of the questions, please write anything you feel may be
pertinent to this study. You may want to tell how Sarcoidosis has affected your life
or other problems you are having that may not have been addressed on the
questionnaire. Please email or call us if you have questions or comments as you
are filling out this form. We understand there may be questions that are not clear.
We will no doubt revise this questionnaire in the future and your suggestions
could be a great help to us. If you know of anyone with Sarcoidosis who hasn’t
heard about this registry, please tell them. Also, please tell your doctor/s or
anyone else who may be interested in this. We want to spread the word that this
registry exists. We are also happy to mail this registry form to anyone who does
not have access to the Internet. Please let us know if you know someone in that
situation.
Remember, the identifiers on this registry form will be put on a non-networked
computer and nobody but a select few will have access to them without your
specific permission. Please be sure to mark the level/s of confidentiality you would
like us to follow in your case. If a carefully screened researcher, hired by this
registry, asks for data, we will only release identifying data as stipulated by you
and HIPAA regulations. Again, thank you so much for participating in this
endeavor. We are excited about this registry and looking forward to making a
great difference in the study of Sarcoid.
Registry Questions
Please follow the level/s of confidentiality I have marked.
Level of Confidentiality:
1) ____The Registry is allowed to disclose information about me without revealing
who I am, strictly for research purposes.
2) ____ The Registry is allowed to use and share data about me without revealing
who I am, for educational and reporting purposes.
3) ____ The Registry is allowed to use and share data about me and also tell
them who I am.
Registry Questions II
A. The following questions have to do with your diagnosis. At the end of the
questions is an area to add your own comments. Please do so if you wish.
1. Before your actual diagnosis of Sarcoidosis, were you diagnosed with a
different condition? If so, what was it?
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2. Were you treated for this condition? If so, did it make your health worse,
better or no change? Please explain.
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3. How long ago were you diagnosed?
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4. How were you diagnosed? What tests and/or procedures were used to
diagnose your Sarcoidosis?
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5. Have you ever been involved in any clinical trials for Sarcoidosis? If so,
please tell us you experience.
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6. What was your prognosis when you were diagnosed with Sarcoid?
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7. What, if any, surgeries have you had pertaining to Sarcoidosis?
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8. What, if any, surgeries have you had not pertaining to Sarcoidosis?
_________________________________________________________________
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9. What kind of medical tests have you had since being diagnosed with
Sarcoidosis and what were they for?
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10. Do you have chronic or acute Sarcoidosis? (Chronic meaning ongoing:
Acute meaning severe onset and then remission)
____________________________
B. The next set of questions pertains to the symptoms you may have because of
Sarcoid. Please respond even if you don’t think the symptom has to do with
Sarcoidosis.
1. Please name any symptoms you currently have.
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2. Do you have other health problems that your doctor says are not
connected with Sarcoidosis? If so, what are they?
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3. Do you have pain? If so, where. Please describe the type, frequency, and
intensity of the pain.
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4. Does the pain limit your life? Please explain.
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5. Do you have fatigue? How severely does the fatigue limit your activities?
_________________________________________________________________
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6. Do you suffer from depression? Is it caused by medication? Do you take
medication for depression?
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7. Do you have numbness, tingling, and electric shock-like pain in your body?
If so, where? Please tell us about this.
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8. Have you ever been diagnosed with Carpal Tunnel Syndrome? If so, does
your doctor attribute it to Sarcoidosis?
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9. Have you ever been diagnosed with Intracranial Hypertension?
_________________________________________________________________
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10. Have you ever been diagnosed with Pulmonary Hypertension?
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11. Have you been diagnosed with Lofgren’s Syndrome?
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12. Have you suddenly gained or lost weight since your diagnosis of
Sarcoidosis?
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13. Do you have unusual trouble with your memory?
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14. Have you had polyps removed or treated? If so, where were they, were
they biopsied, and what was found?
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15. Have you ever been allergic to bug bites?
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16. Do you have arthritis? If so, does your doctor relate it to Sarcoidosis?
_________________________________________________________________
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17. If you are a woman, have you ever had a hysterectomy? If so, was it due
to endometriosis? If so, was it biopsied for Sarcoidosis or cancer? If it wasn’t due
to endometriosis, why did you have a hysterectomy? Please explain.
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18. Do you have diabetes? If so, was it prednisone induced? If not, do the
doctors know why you have it?
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19. Did you have childhood diseases that now seem related to Sarcoidosis?
_________________________________________________________________
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C. The next set of questions has to do with the medications you have taken or are
currently taking.
1. Are you currently on medications?
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_
2. If so, what are you taking now and what have you taken in the past?
_________________________________________________________________
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3. Have you had any side effects from the medications? Please explain.
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4. Are any of the medications you take making a difference in your Sarcoid?
Please explain.
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5. Have you had medications that you have taken and stopped? Did you see
a difference for better or worse? Please explain.
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6. In taking your medications, does it seem that any of them make the
Sarcoidosis worse?
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7. Have you tried experimental drugs, alternative treatments, or herbs? Please
tell us
your experiences with these?
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D. The next set of questions is about the doctors you have seen.
1. What kind of doctors have you seen?
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2. Did you have trouble finding a doctor knowledgeable in Sarcoidosis or at
least willing to learn? Please tell us your experiences.
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3. What doctor has been the most help to you?
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4. How did you find your doctors?
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E. The next set of questions is about your lifestyle.
1. Has Sarcoidosis limited your activities of daily living? Please explain.
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2. Do you work? If so, has Sarcoid affected this?
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3. Have you had to change your lifestyle because of Sarcoidosis? Please
explain.
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4. If you work or are covered by insurance, does your insurance meet your
needs for Sarcoidosis? Please explain either way.
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5. Are you on disability? If so, is it because of Sarcoid? If not, is it for a
condition related to Sarcoidosis? If so, was it difficult to get disability? Please tell
us your experience whether you have disability for Sarcoid or for another
condition.
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6. If you are overweight, have you been told that your weight is the cause of
your symptoms?
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7. Do you, or have you ever, smoked?
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8. If you have smoked and have quit, how long ago did you smoke, for how
long, and how much?
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F. The next set of questions is about your family and your living environment. We
need answers to questions about where you lived and worked for your whole life.
1. In what countries, states, and regions have you lived in your lifetime?
Please tell us if this area is rural or urban; if it is farmland, industrial, etc.
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2. How long did you live in each area?
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3. In what environments have you worked?
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4. Have you been exposed to toxins in your lifetime? This could mean
volcanic ash, cleaning solutions, paper mills, chemicals, farm toxins, etc. Please
explain.
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5. Have you been exposed to metal shavings or fabrication plants? Please
explain.
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6. What is your ethnicity? If it is multi-ethnic, please tell us as much as
possible about each. Please be specific: i.e. Irish, English, African-American, etc.
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7. Has anyone in your family had cancer?
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8. Have you ever had cancer? Please tell us about it.
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9. Has anyone in your family ever had Sarcoidosis or any other autoimmune
disease?
If so, please explain.
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____________________________
10. Do you, or have you ever, had any other autoimmune disease?
_________________________________________________________________
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G. The next set of questions has to do with the availability of help you have found.
1. How did you hear about this registry?
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2. Are you involved with a support group? If so, how did you hear about it?
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3. Have you had problems finding reliable information about Sarcoid?
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4. How long after you were diagnosed was it that you met another person with
Sarcoid?
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5. If you answered “no” to having been in a clinical trial, are there reasons
you have not been?
_________________________________________________________________
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6. Are you willing to be involved in a clinical trial?
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H. I know we have already asked you about what areas of your body are affected
by Sarcoidosis, but below are listed many areas Sarcoid can affect. Please put a
mark by each one that fits you.
Eyes ____ Brain (Neurosarcoidosis) _____ Oral _____
Nose and/or Sinuses _____ Heart ____ Lungs ____ Spleen
_____
Liver ____ Kidneys _____ Gastrointestinal ____ Nerves
______
Muscles ____ Joints ____ Skin______ Lymph Nodes
_____
Spine _____ Esophagus _____ Reproductive Organs ______
Pancreas _____ Hearing _____ Bone _____ Marrow ______
Other ___________________________________________
Sarcoidosis is a disease that presents itself differently in everyone. Because of
the nature of the disease, there may be experiences you have had with Sarcoid
that we have not listed or that are personal to you. These can include symptoms,
your lifestyle, where you lived, what you have been exposed to, familial
information, organ involvement, and medical experiences. If you wish, please use
this page for telling your story. If you give us permission, we would like to share
some of your experiences with others on this website. We will do this without using
your name, but as we find similarities, it may help others relate to what has
happened to them. This is totally up to you. We will not share this area unless you
tell us we may. Thank you for participating in this survey. The work you are
sharing in will hopefully save lives and find a way to stop Sarcoid’s destruction.
