Date:
Name:
Address
City
State/Zip
Phone
Email Address:
What is your gender?
Male
Female
Age:
Doctors names, addresses, phone numbers.
Do we have permission to contact your doctors?
Yes
No
Please give the dates of your last doctor visit by date and doctor name.
Levels 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.
Please tell us the number you wish us to use.
Before you were diagnosed with Sarcoidosis, were you diagnosed with a different condition? If so, what was it/
2.Were you treated for this condition? If so, did it make your health worse, better or no change? Please explain.
3.How long ago were you diagnosed?
4.How were you diagnosed? What tests and/or procedures were used to diagnose your Sarcoidosis?
5.Have you ever been involved in any clinical trials for Sarcoid? If so, please tell us your experience.
6.What was your prognosis when you were diagnosed with Sarcoid?
7.What, if any, surgeries have you had pertaining to Sarcoidosis?
8.What, if any, surgeries have you had not pertaining to Sarcoidosis?
9.What kind of medical tests have you had since being diagnosed with Sarcoidosis and what were they for?
10.Do you have chronic or acute Sarcoidosis? (Chronic means ongoing; Acute means severe onset and then remission)
1.Please name any symptoms you currently have, even if you don't think they are related to Sarcoid.
2.Do you have other health problems that your doctor says are not related to Sarcoid? If so, what are they?
3.Do you have pain? If so, where. Please describe the type of pain (burning, sharp, aching, etc) frequency, and intensity of the pain.
4.Does the pain limit your life? Please explain.
5.Do you have fatigue? If so, how severly does the fatigue limit your activities?
6.Do you suffer from depression? Is it caused by medication? Do you take medication for depression?
7.Do you have numbness, tingling, and/or electric shock-like pain in your body? If so, where? Please tell us about this.
8.Have you ever been diagnosed with Carpal Tunnel Syndrome?
Yes
No
9.Have you ever been diagnosed with Intracranial Hypertension? (formerly known as psuedo tumor cerbrei)
Yes
No
10.Have you ever been diagnosed with Pulmonary Hypertension?
Yes
No
11.Have you ever been diagnosed with Lofgren's Syndrome?
Yes
No
12.Have you suddenly lost or gained weight since your diagnosis of Sarcoidosis?
Yes
No
13.Have you ever been diagnosed with Sjorgren's?
Yes
No
14.Have you ever been allergic to bug bites?
Yes
No
15.Do you have unusual trouble with your memory? Please explain.
16. Have you had polyps removed or treated? If so, where were they, were they biopsied, and what was found?
17. Do you have arthritis? If so, does your doctor relate it to Sarcoidosis? Please explain.
18. 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? What was the result?If it wasn't due to endometriosis, why did you have a hysterectomy? Please explain.
19. Do you have diabetes? If so, was it prednisone induced? If not, do the doctors know why you have it?
20. Did you have childhood diseases that now seem related to Sarcoidosis? If so, please explain.
21. Have you ever had cellulitis? If so, was it related to Sarcoid? If so, have you had ongoing problems with this?
1. Are you currently on medications?
Yes
No
2a. If so, what are you taking now and what for?
2b. What have you taken in the past and what for?
3. Have you had any side effects from the medications? If so, please explain.
4. Are any of the medications you are taking making a difference in your Sarcoidosis? Please explain.
5. Have you had medications that you have taken and stopped? Did you see a difference for better or worse? Please explain.
6. In taking your medications, does it seem that any of them make the Sarcoidosis worse?
7. Have you tried experimental drugs, alternative treatments, or herbs? Please tell us your experiences with these.
1. What kind of doctors have you seen?
2. Did you have trouble finding a doctor knowledgeable in Sarcoidosis, or at least willing to learn? Please tell us your experiences.
3. What type of doctor has been the most help to you?
4. How did you find your doctors?
1. If Sarcoidosis has limited your daily activities, please explain. Compare what you did before the effects of Sarcoid and after.
2. Do you work? If so, how has Sarcoid affected this.
3. How have you changed your lifestyle to accommodate Sarcoidosis, if at all?
4. If you work, are you covered by insurance? If so, does your insurance meet your needs for Sarcoidosis? Please explain.
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.
6. If you are overweight,have you been told that your weight is the cause of some or all of your symptoms? Please explain.
7. Do you, or have you ever, smoke?
Yes
No
Smoked, but quit
8. If you smoke or have smoked and quit, please explain your smoking history.
1. In what countries, states, and regions have you lived in your lifetime? Please tell how long you lived in each and if the area is rural, urban, farmland, industrial, etc. This is important since Sarcoidosis seems more prevalent in certain areas.
2. In what type of environments have you worked?
3. Have you ever been exposed to toxins in your lifetime? This could be volcanic ash, cleaning solutions in a large quantity (as in janitorial work), paper mills, chemicals, farm toxins, etc. Please explain.
4. Have you ever been exposed to metal shavings, as in a fabricating plant, etc. If so, for how long and about how often? Please explain.
5. What is your ethnicity? If it is multi-ethnic, please tell us as much as possible about each. There is data that says certain ethnicities are more prone to certain types of Sarcoidosis.
7. Have you or anyone in your family ever had cancer? If so, please tell us about that.
8. Has anyone else in your family had Sarcoidosis? If so, please tell us their relation to you and their symptoms. (Also, please tell them about us!)
9. Have you or any relatives had an autoimmune disease/s? If so, please tell us about that.
1. How did you hear about the registry?
2. Are you involved with a support group, whether online or in person? If so, how did you hear about it?
3. Have you had problems finding reliable information about Sarcoidosis? Please tell us about your experiences.
4. How long after you were diagnosed was it that you met another person with Sarcoid? How did that happen?
5. If you answered no to having been in a clinical trial, are there reasons you have not been?
6. If you had an opportunity to be in a clinical trial, would you be willing?
Yes
No
It depends
I know we have already asked you about what areas of your body are affected by Sarcoidosis, but below are listed many areas that Sarcoid can affect. Please put a mark by each one that fits you.
Because Sarcoidosis affects us all differently, we understand that we may not have covered everything happening to you. You are the only one that can tell us how Sarcoid has affected your life. Please take this opportunity to tell us your story. If you give us your permission, we may, with your permission, want to use your experience, with or without your name as you wish, to share with others. This is only with your permission. Thank you so much for taking part in this survey. You are a part of a great voice speaking out for those of us with Sarcoidosis. Please tell others about this registry. Again, thank you.
