Study for People with Cushing’s Syndrome – http://curec.lk/2024gOt
This trial is testing the safety and effectiveness of an investigational drug for the treatment of Cushing’s Syndrome. Under the supervision of qualified physicians, cortisol levels and symptoms of Cushing’s Syndrome will be closely followed along with any signs of side effects. More about the study: The study drug (COR-003) is administered by tablets. There will be 90 participants in this trial There is no placebo used in the trial If you are interested, please find the full study details and eligibility criteria listed here. Eligibility Criteria: Participants must: be at least 18 years old have been diagnosed with endogenous Cushing’s Syndrome by a medical professional (not caused by the use of steroid medications) Participants must not: have been treated with radiation for Cushing’s Syndrome in the past 4 years be currently using weight loss medication have been diagnosed with uncontrolled hypertension, some forms of cancer, adrenal carcinoma, Hepatitis B / C, or HIV Please complete the online questionnaire to check if you’re eligible for the trial. If you’re not familiar with clinical trials, here are some FAQs: What are clinical trials? Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people. Why participate in a clinical trial? You will have access to investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future. Learn why I’m talking about Clinical Trials – http://curec.lk/1Gb4toG
This research study is testing whether a new investigational drug that targets eosinophils (a type of white blood cell) could help patients with COPD (chronic obstructive pulmonary disease) control symptoms and reduce exacerbations (flare-ups) that lead to hospitalizations. The new investigational drug will be compared to oral and inhaled corticosteroids, the current standard of care for COPD.
More about the study:
- The study drug (Benralizumab) is administered by Subcutaneous (under the skin) injection (SC).
- There will be 3794 participants in this trial
If you are interested, please find the full study details and eligibility criteria listed here.
Eligibility Criteria:
Participants must:
- be between 40 – 85 years old
- have been diagnosed by a medical professional as having severe to very severe COPD
- be a current smoker or former smoker
Participants must not:
- be taking any steroid medications by mouth on a regular basis
- have been diagnosed with any type of cancer (except skin or cervical) within the past 5 years.
Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:
What are clinical trials?
Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.
Why participate in a clinical trial?
You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
This research study is testing whether a new investigational drug that targets eosinophils (a type of white blood cell) could help patients withCOPD (chronic obstructive pulmonary disease) control symptoms and reduce exacerbations (flare-ups) that lead to hospitalizations. The new investigational drug will be compared to oral and inhaled corticosteroids, the current standard of care for COPD.
More about the study:
- The study drug (Benralizumab) is administered by Subcutaneous (under the skin) injection (SC).
- There will be 3794 participants in this trial
If you are interested, please find the full study details and eligibility criteria listed here.
Eligibility Criteria:
Participants must:
- be between 40 – 85 years old
- have been diagnosed by a medical professional as having severe to very severe COPD
- be a current smoker or former smoker
Participants must not:
- be taking any steroid medications by mouth on a regular basis
- have been diagnosed with any type of cancer (except skin or cervical) within the past 5 years.
Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:
What are clinical trials?
Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.
Why participate in a clinical trial?
You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
There is a new clinical trial seeking participants who have Prostate Cancer. Prostate cancer is the second most frequently diagnosed cancer globally. A significant proportion of patients who are treated have their prostate cancer come back or spread. The purpose of this clinical trial is to assess if the study medicine helps prevent or slows your cancer from spreading to other parts of your body.
Here is some basic information:
Participants must:
- be male
- at least 18 years old
- have been diagnosed with prostate cancer
Participants must not:
- have prostate cancer that has spread to the bone
- be currently participating in any other clinical trial
The full study details and eligibility criteria are listed here.
Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:
What are clinical trials?
Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.
Why participate in a clinical trial?
You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
My records have major mistakes
By Barby Ingle
(excerpt from The Pain Code Book)
Your medical record is comprised of all information generated during your treatment with all healthcare providers. The providers keep track of many aspects of your treatment, including personal, financial, social, and medical information. Many providers are using written forms and notes, but over the past few years, there are great electronic medical record keeping programs that are coming to the market. I am seeing more and more the providers coming in with their laptop and all of my information is in my electronic file. It is important to know what is in your record.
After you order and receive your copies, go through them and check for errors. Check everything because these records are used as a means of communication between your healthcare professionals, hospital staff, physical therapist, etc. They are a legal documentation of the care you have received, a verification of services and many insurance companies request them in chronic care cases to decide on approval of treatment options. The records also serve as basic data for research and education purposes.
It is important to correct mistakes you find on your records. Once a doctor enters the records they are not supposed to change them in many cases. But that doesn’t mean you can do something about the mistakes. When I find mistakes I create a letter and form to the provider to be attached to my medical record. So, if another provider, lawyer (in the case of WC or personal injury) receives a copy, they see the corrections and don’t get thrown off by mistakes that lead to a misdiagnosis, confusion, or delay in proper and timely care.
Sample letter
Dear Dr. XYZ,
Thank you so much for evaluating me on March 15, 2015. It means a lot to me to have you on my medical team. Things are progressing thanks to the hard work you and your office staff have put in to making the treatment you got/are getting a possibility for me.
Update on your condition/treatment since last visit. (example: To date I have done my chest x-ray, echo-cardio gram, blood testing. This week I will be completing my Neuro-Psychological evaluation and insertion of my Portacath. My plan is to then take the appropriate time to heal from the Portacath surgery and then complete XYZ. I will have my Portacath placed at which hospital on June 30, 2015. My future Portacath monthly care will take place at HHH.)
I have had a chance to look over your medical record notes from my recent examination. I understand that this is your assessment of the examination that took place and it is already written into my file. I would like to take this opportunity to have included in this record the attached response to make sure that we have included all pertinent information.
Please feel free to contact me to discuss this. Otherwise, I will see you in a few weeks at our next appointment. I am really looking forward to working with you. I thank you so much for all of your help, patience, and support as I complete this process.
Sincerely,
Your name
Your contact info
Corrections to Dr. XYZ records dated 4/15/2015
Page 1
Section – PRESENT ILLNESS INFORMATION
Report States: Chief Complaint: Facial, neck, head, abdominal, back, buttocks, leg, hip, foot pain
Patients Correction: Chief Complaint: Facial, neck, head, abdominal, back, buttocks, chest, both legs, both feet, pelvic pain, both arms, both hands, thoracic pain, full body RSD/CRPS, Graves
Page 2
Section- PAST, FAMILY AND SOCIAL HISTORY
Report States: Med Allergies: Keflex: Unknown, unspecified
Patients Correction: Med Allergies: Med Allergies: Keflex: Diarrhea; dizziness; headache; indigestion; joint pain; stomach pain; tiredness, rash; hives; itching; difficulty breathing; tightness in the chest; confusion; dark urine, Erythromycin, hives, diarrhea, vomiting, Trazadone: fast, irregular heartbeat, feeling faint or lightheaded, hallucinations, mood changes, trembling, headache, nausea, vomiting, unusually weak or tired
Report States: Non-Med Allergies: Food Allergies or intolerance: None
Contact allergies: none
Contrast agent (dye) allergies: none
Patients Correction: Non-Med Allergies: Food Allergies or intolerance: None
Contact allergies: none
Contrast agent (dye) allergies: none
Tape Adhesive- skin blistering and rash
Report States: Surgeries and Hosp: Problems with anesthesia: none
Previous surgery: none
Previous non-surgical hospitalizations: none
Patients Correction: Surgeries and Hosp: Problems with anesthesia: Nausea
Previous surgery:
|
7/1999 |
Jaw Surgery |
|
8/2000 |
Straighten Deviated Septum |
|
3/2001 |
Ganglion Nerve Block (series of 2) |
|
4/2003 |
Epidural Nerve Block (series of 3) |
|
7/2009 |
Appendectomy |
|
2010 |
Arthroscopic Meniscus Repair, Right Knee |
|
2/8/2012 |
Hysterectomy; endometriosis |
Previous non-surgical hospitalizations: none
Section – OBJECTIVE
Report States: Construction (final comment): Patient arrived at XYZ today ambulatory, without the use of any support equipment. Patient was accompanied by: Adult Female
Patients Correction: Construction: (final comment): Patient arrived at XYZ today ambulatory, with the use of any support equipment (cane). Patient was accompanied by: Her Husband and Adult Female.
Report States: Musculoskeletal: Right upper extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.
Left upper extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.
Right lower extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.
Left lower extremity: normal inspection/palpation, ROM, muscle strength and tone, and stability.
Patients Correction: Musculoskeletal: Right upper extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability.
Left upper extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability.
Right lower extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability.
Left lower extremity: abnormal inspection/palpation, ROM, muscle strength and tone, and stability
Page 3
Report States: Skin: Normal skin, subcutaneous tissue, scalp, hair, eccrine and apocrine glands.
Patients Correction: Skin: Abnormal: skin, eccrine and apocrine glands, Blanching, Rash, Excess sweating and Skin Ulcers present. Normal: subcutaneous tissue, scalp, hair
Report States: Neurologic: Gait: Normal
Station: Normal
Patients Correction: Neurologic: Gait: Abnormal
Station: Abnormal
Section- PLAN
Report States: Comments: Patient checked out of XYZ today ambulatory, without the use of any support equipment. All questions were answered and patient verbalized understanding of today’s visit, including treatment and orders. Patient was accompanied by: Adult Female.
Patients Correction: Comments: Patient checked out of XYZ today ambulatory with the use of any support equipment (cane). All questions were answered and patient verbalized understanding of today’s visit, including treatment and orders. Patient was accompanied by: Her Husband and Adult Female.
Requesting Healthcare Records
By Barby Ingle
(excerpt from The Pain Code Book)
One thing I have learned over the years is how important it is to keep a copy of all of your medical records. My insurance companies have tried to force me into “step therapy” and without my medical records it would have been very difficult and long process to get through. I save my providers time as well, when I can fill out the insurance forms for appeals and send them over for the doctor to just review and forward on. In 2012, I was again faced with a step therapy request from my insurance company that came in the form of a written letter. They said, “If you have already tried the other medications with fail, your doctor should have done the Medform 3500, which is completed and sent into a clearing house.”
There is voluntary reporting form 3500, and the 3500A that is for issues that are mandatory to report. I went online and found the form and directions on the FDA government website. [1] Once I filled in all of the information, I copied it, attached the pertinent records, and sent it to my doctor. He finished completing it (using the records I attached) and signed and faxed it in. A few days later I called the insurance company to let them know I had a Medform 3500 on file. Within a few hours of calling my insurance company to let them know my medication was ready to be picked up from the pharmacy and they dropped the step therapy requirement for me.
You can typically obtain your medical records by writing out a request or filling out a premade form from the provider.
Your record request should include the following: [2]
- Date of the request
- Full Name
- Date of birth
- Social security number
- Telephone number
- Name, address, fax, and telephone number where the records are to be sent
- Purpose of the request (typically, there can be a charge for ordering your records). Each state has different laws on how much can be charged, for instance, there is a law in Arizona that if the records are being used for continuing care, the provider cannot charge you
- Specific items or dates of service needed
- Any restrictions on the request
- Date this authorization expires (authorizations must be less than one year old)
- A statement in writing indicating that the patient knows that they have a right to revoke this authorization at any time
- A statement indicating that the patient knows that signing this authorization is not a condition of obtaining treatment
- A statement indicating that the patient understands the potential for the protected health information to be re-disclosed by the recipient and no longer protected
- The signature of the patient or, if the patient is a child, the parent or guardian. If signed by a personal representative, a description of his/her authority to act for the individual and a copy of the document giving that authority. Records are not usually released while a patient is still hospitalized because they are incomplete
If you are in a state that is able to charge for copies of your medical records, you may save some money asking for specific documents or all recent major reports rather than requesting the entire record. Most of my requests have been filled with in 5 to 10 days but it may take up to one month. If you have not heard back in 30 business days, you may want to call or send a written follow up request. A few providers are offering your records online and others may provide it to you in electronic form if you provide them a flash drive.
Check with each provider as to the method they prefer. Some providers will fax medical records and some will only fax them to another healthcare provider in cases of immediate emergency. Your records are the physical property of the provider, however, the patient controls the release of the information contained in their record. In addition, if you are moving away from your provider, you may request your entire file so that you may provide it to the next provider who will be taking over your care. Providers must keep a copy of your records for a particular amount of years. In some states it is seven, others it is ten years, although most providers keep them longer.
[1] www.fda.gov/Safety/MedWatch/HowToReport
[2] Sample in The Pain Code Journal
CureClick Ambassador’s Best Share Practices for Social Media
By Barby Ingle, Advisory Board Member, CureClick
President, Power of Pain Foundation
March 21, 2015
I have been using social media and blogging since 2009 and realized that there are some posts that go viral or are liked, shared, followed, etc… more than others. When I became a CureClick Ambassador I wanted to be sure to have mindful posts and be able to share on all of my social media accounts. I use Facebook, Twitter, LinkedIn, Pinterest, Instagram, and my personal blog. Below are a few tips I have learned throughout the years of being a chronic pain advocate to raise social awareness, including new tools that I learned once I began posting the CureClick Research Trial information.
First I found, as ambassadors we need our posts to be based on trust, engaging and important to our built in community so that they will want to share it even further. Second, CureClick offers great samples of proper posts for each type of forum. Take advantage of their premade ideas, at the same time, add a personal touch when possible. Each time I post to a social media account, I tailor my posts to the forum I am posting to. For instance, on Twitter, we can only post 140 character posts whereas my blog posts can be much longer. I also work to post a different message each time I post it on social media. For example if I used text from the premade selections, I choose a different idea for the next post. Third, knowing that posts don’t stay in news feeds long I try to be smart on the posting by adding something that will catch the reader’s attention like a picture or video reference. If they miss it in the newsfeed, I want my page to be engaging so that they keep returning for new information. Fourth, use the hashtags provided and an others that you think may engage your members/followers specifically. Fifth, include your specific link for that trial so that you get the credit for clicks and completions. Finally, I reformat the post for the platform being used. For example on Facebook I take out extra space so that the post can be read with the main headline, my personal link, additional trial info, hashtags, and then my connection to CureClick. On Twitter, I include the main title, my link, and important hashtags and attach the pic. I also will make a more generic post when there is not any new trials that includes 5-6 of the trials with just the title and link to read more.
Here are a few general do’s and don’ts when it comes to posting your CureClick Trial Information:
Do’s:
- Ask yourself, “is this something I would like to see?” If it is not something you would want to see in your newsfeed, then avoid posting it.
- Being positive promotes engagement and encourages sharing.
- Carefully plan your posts and try to think of the value you are adding by posting any and all content. The best content is going to connect at an emotionally, educational, and/or social level.
- Chose posts that can be backed up if questioned, and use references when needed.
- Post with pictures or video. People are way more likely to respond, like, click a link, etc. when there is a graphic, picture or video in the post.
- Share and talking about content published by other support groups, media, bloggers that is informative and/or motivational.
- Show support for your cause. Let the passion you have shine by creating content that fits your brand. Aim for 90% informational and 10% (or less) promotions.
- When posting informational posts, have 1-2 reference you can refer the person back to. In case someone asks you more info, you can say, refer to x and y for greater understanding.
Don’t:
- Do not use medical articles over 5 years old as a source of scientific information. Unless you have it as a backup source to a newer article/study.
- Don’t be negative sourpuss, it may cost you followers. People are quick to unlike a page if posts are negative or controversial.
- Don’t ignore supportive/useful comments. Building relationships is one of the most important parts of social media marketing success, so acknowledge comments that are useful/supportive.
- Don’t limit the content to promotional updates.
- Don’t Post and Run – Follow up on your posts to answer questions or comments for at least two days after posting, so it doesn’t look like you post and run. You wouldn’t ignore someone in true need who reaches out to you in person so don’t ignore them online.
- Don’t spam hashtags, it shows you in a disrespectful and distasteful light.
- Don’t be too pushy or forward; you want to make a good impression.
- Post no more than 5 posts a day with a goal of 8-10 a week, so you are not overwhelming your followers but providing enough content to keep them engaged.
NEW ASTHMA TREATMENT AVAILABLE IN CLINICAL TRIAL
If you have Mild or Moderate Asthma and you’re looking for new treatment options, this clinical trial may be right for you.
This study is for patients who have mild or moderate asthma and are using a reliever inhaler. If approved, it is hoped that the study drug will improve your lung function and overall symptoms of asthma.
More about the study:
- The study drug (Lebrikizumab ) is administered by Subcutaneous injection (SC).
- This trial is 22 weeks long, requiring 9 visits and 0 overnight stays
If you are interested, full study details and eligibility criteria are listed here.
Eligibility Criteria:
Participants must:
- between 18 – 75 years old
- be diagnosed with asthma for more than 1 year
- be willing to attend 9 study visits over a 22 week period of time
Participants must not:
- have used corticosteroids in the last 4 weeks
- have any other lung diseases (like COPD )
- be a current smoker
If you’re not familiar with clinical trials, here are some FAQs:
What are clinical trials?
Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.
Why participate in a clinical trial?
You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Please complete the online questionnaire to check if you’re eligible for the trial.
Why Barby Ingle Became a CureClick Ambassador and Now Serves On the CureClick Advisory Board
by Barby Ingle
Advisory Board Member, CureClick
President, Power of Pain Foundation
Back in November, 2014 I received a request to become a CureClick Ambassador. What is this all about, I thought to myself? Is it helping pain patients and the chronically ill? After checking it out, I realized that this was a perfect tool to share clinical research trials with the pain community I work with. I also realized that is has far more reach than that, as my friends and followers pass it on to their connections. I personally have family members who have suffered multiple strokes, TBI and Alzheimer’s, COPD, vascular issues, quad-bypass surgeries, diabetes, RSD, etc. With over 130 million Americans living with a chronic illness it affects our entire population, either as a patient, caregiver, or provider. Since my start I have help recruit trail participants for chronic obstructive pulmonary disease (COPD), HR+, her2- breast cancer, memory loss or alzheimer’s disease, people at risk of developing early alzheimer’s disease, rheumatoid arthritis, severe asthma, type-2 diabetes with severe kidney disease and type-2 diabetes. There are more and more trials being updated and posted frequently. Three upcoming trials that I know of are pre-alzheimer’s, non-small cell lung cancer stage IV, and prostate cancer.
I love that I can share valuable education about the importance of clinical trials and help teach others about the research process. In the past few months I have been spreading the word about a new trials in addition to sharing statistics and why that trial is so important. I decided to write this blog post about my experiences for the last 5-6 months so that my friends, followers and members of the POPF understand why I got involved and why I am so proud to have been asked to be on the advisory board.
The resource area on the CureClick site include overview videos, more info on how rewards work, how I am being compensated, etc. For me personally, I have decided to donate the funds I raise to help the Power of Pain Foundation. My compensation comes in the form of Amazon Gift Cards. I deposit these cards into the POPF Amazon account, and when we need supplies or resources off of Amazon, we are able to purchase them with these funds. It has been working out great. To date I have raised $200 ($150 as an advisory board member, and $50 due to participation of those who have qualified to participate in the trials).
As new trials come open I will post information and a link on my social media accounts. My friends and followers will be informed readers when it comes to where to go to read about the trial and how to apply if they feel they are a good fit for the trial. All of the information I provide in my posts has been carefully worded, and then meticulously reviewed by a federally-regulated governing body known as the Institutional Review Board (IRB). This way my readers can know it is legit and accurate. A typical post from me will be with a graphic with information/education about the disease the trial represents, text such as the study title, purpose, study locations, eligibility criteria, and the link to check it out for yourself. I want your participation so that those you love in your life to get help with their illness in a proper and timely manner. The most important part to me is that I am educating all of you about trials and disease specific information on a variety of chronic diseases.
Can you become a CureClick Trial Ambassador? You can learn more about CureClick at http://curec.lk/1Gb4toG
Biogen Idec is running a registry for researchers to advance their knowledge of early Alzheimer’s Disease. If you’re having memory problems or are worried you’re at risk of early Alzheimer’s, you can play an important role in improving our understanding of the disease. You will have the opportunity to learn about and take part in local studies looking at new treatment options. You will also receive some reimbursement for your time.
More about the registry:
- There will be 14000 participants in this registry
- This registry will take place over two years requiring no visits or overnight stays
- This registry is taking place nationwide and you can complete it from the comfort of you own home.
If you are interested, the full study details and eligibility criteria are listed here.
Eligibility Criteria:
Participants must:
- be between 50 – 85 years old
- be willing to answer questionnaires periodically over a 2 year block of time
- be concerned that you are at risk for developing early Alzheimers have difficulty with memory or thinking skills
Participants must not:
- already be diagnosed with Alzheimers Disease
- have had events of stroke, epilepsy, or Parkinson’s Disease Please complete the online questionnaire to check if you’re eligible for the trial.
ADDITIONAL INFO ON THE REGISTRY
If you agree to participate in the registry, you will be asked to complete an online questionnaire to assess how you understand, remember, and communicate information. This questionnaire will be repeated every 3 – 6 months. You will also be asked to take a brief 10 – 15 telephone call, which will be repeated every 6 months. The registry team may use your answers to see if you may qualify for another clinical research study. If you are interested in participating, we will ask for your permission to send your contact details to the study center. After you speak with someone at the study center, you can decide whether or not you want to participate in the study.
Please complete the online questionnaire to check if you’re eligible for the registry.