Lupus Foundation of America Inc.

Lupus Research Registry

The Lupus Research Registry allows people to register to receive email alerts of clinical trials in their area based on the information provided by the user at registration.

To join the registry, please complete the form below and submit your registration. Our Lupus Research Registry Privacy/Confidentiality Statement is available for review. (opens in a new window)

The Lupus Research Registry is part of LFA’s ongoing efforts to advance the science and medicine of lupus and help speed development and approval of new, safer and more tolerable treatments for lupus. The registry ensures the community is informed and engaged in the quest for new treatments and ultimately a cure for lupus.

Please provide your information below:


	Title:
*	First Name: Required
	Middle Name:
*	Last Name: Required
	Suffix:
*	Email: Required
*	Street 1: Required
	Street 2:
*	City: Required
*	State / Province: Required
*	ZIP / Postal Code: Required
*	Country: Required
*	Gender: Required
*	Date of Birth: Required	Date of Birth:
	If you respond and have not already registered, you will receive periodic updates and communications from Lupus Foundation of America.
	Remember me.

*

Question - Required - I would like to receive email and or postal mail from the LFA chapter in my area.

*

Question - Required - Primary language spoken at home:

Question - Not Required - If you chose Other, please explain:

Question - Not Required - Ethnicity:

*

Question - Required - What form of lupus do you have?

Question - Not Required - If you were first diagnosed with cutaneous lupus, has the disease progressed to systemic lupus?

Question - Not Required - How long did it take for you to obtain your lupus diagnosis?

Question - Not Required - Number of physicians seen before diagnosis made

Question - Not Required - What type of physician or health care provider diagnosed you?

Question - Not Required - If you chose Other, please explain:

Question - Not Required - Were you diagnosed with mild, moderate or severe lupus at the time of diagnosis

Question - Not Required - When did your last lupus flare occur?

Month

Day

Year

*

Question - Required - Approximately how many times per year do you experience lupus flares?

In the section below please note the types of medication and treatments you are currently on. Please check all that apply.

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Question - Required - Anti-inflammatories (aspirin, Tylenol, Motrin, Naprosyn, Relafen, Celbrex, etc)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

*

Question - Required - Corticosteroids (cortisone, or steroids for example)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

*

Question - Required - Antimalarials (Plaquenil, for example)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

*

Question - Required - Immunosuppressives (immune modulators such as Cytoxan and Imuran, etc)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

*

Question - Required - Anticoagulants (aspirin, Coumadin, for example)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

*

Question - Required - Biologics (Orencia, for example)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

*

Question - Required - Hormones/birth control

Question - Not Required - If you chose Yes, how long have you been on this treatment?

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Question - Required - Monoclonal Antibodies (Rituxan, for example)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

*

Question - Required - Organ transplant anti-rejection drugs (CellCept, for example)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

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Question - Required - Topical Immunomodulators (Protopic and/or Elidel)

Question - Not Required - If you chose Yes, how long have you been on this treatment?

Question - Not Required - Other?

Question - Not Required - If you chose Other, how long have you been on this treatment?

Question - Not Required - Types of medication have been on in the past:

	Anticoagulents
	Anti-inflammatories
	Antimalarials
	Biologics
	Corticosteroids
	Hormones/birth control
	Immunosuppressives
	Monoclonal antibodies
	Organ transplant anti-rejection drugs
	Topical immunomodulators
	Other

*

Question - Required - Do you have any medication allergies?

Question - Not Required - Do you have any organ involvement? If so, which organ(s)?

	Brain (Central Nervous System)
	GI System (liver, pancreas, etc)
	Heart
	Kidneys
	Lungs
	Skin

Question - Not Required - In addition to lupus, do you have any other illnesses or conditions?

	Fibromyalgia
	Mixed Connective Tissue Disease
	Polymyositis-Dermatomyositis
	Raynauds
	Rheumatoid arthritis
	Scleroderma
	Sjogren's
	Other

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Question - Required - Have you ever participated in a clinical trial?

Question - Not Required - If you have not participated, would you consider participation?

Question - Not Required - If you would not consider participation, why not?

*

Question - Required - Would you be interested in learning more about clinical trials in your area?

Question - Not Required - If yes, what is the best way to contact you?

Question - Not Required - How far would you be willing to travel?

Do any other individuals in your family have either lupus or another autoimmune disease?

*

Question - Required - Mother

Question - Not Required - If so, which one(s)?

	Fibromyalgia
	Lupus
	Mixed Connective Tissue Disease
	Polymyositis-Dermatomyositis
	Raynauds
	Rheumatoid arthritis
	Scleroderma
	Sjogren's
	Other

*

Question - Required - Father

Question - Not Required - If so, which one(s)?

	Fibromyalgia
	Lupus
	Mixed Connective Tissue Disease
	Polymyositis-Dermatomyositis
	Raynauds
	Rheumatoid arthritis
	Scleroderma
	Sjogren's
	Other

*

Question - Required - Sister

Question - Not Required - If so, which one(s)?

	Fibromyalgia
	Lupus
	Mixed Connective Tissue Disease
	Polymyositis-Dermatomyositis
	Raynauds
	Rheumatoid arthritis
	Scleroderma
	Sjogren's
	Other

*

Question - Required - Brother

Question - Not Required - If so, which one(s)?

	Fibromyalgia
	Lupus
	Mixed Connective Tissue Disease
	Polymyositis-Dermatomyositis
	Raynauds
	Rheumatoid arthritis
	Scleroderma
	Sjogren's
	Other

*

Question - Required - Child

Question - Not Required - If so, which one(s)?

	Fibromyalgia
	Lupus
	Mixed Connective Tissue Disease
	Polymyositis-Dermatomyositis
	Raynauds
	Rheumatoid arthritis
	Scleroderma
	Sjogren's
	Other

*

Question - Required - Other family member

Question - Not Required - If so, which one(s)?

	Fibromyalgia
	Lupus
	Mixed Connective Tissue Disease
	Polymyositis-Dermatomyositis
	Raynauds
	Rheumatoid arthritis
	Scleroderma
	Sjogren's
	Other