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  Terms & Conditions                                                                                                                                     

Privacy Policy

Projects In Knowledge is committed to protecting the privacy and confidentiality of visitors to our Web site. While Projects In Knowledge does not require that you provide us with personally identifiable information in order to visit our Web site, please note that in order to participate in the continuing medical education activities that we provide, it will be necessary for you to register with us and provide this information.

About this Privacy Policy
www.projectsinknowledge.com is our Web site for physicians and allied health care professionals, although it is open to non-professionals as well. The purpose of projectsinknowledge.com is to provide continuing medical education for healthcare professionals, and is intended for use only by a licensed healthcare professional.

Projects In Knowledge is the name we use to refer to our entire company, even though our formal corporate name is Projects In Knowledge, Inc. When we refer to ourselves as "we" or "Projects In Knowledge," we mean our company, Projects In Knowledge, Inc., including any subsidiary that we control (for example, a subsidiary that we own). We may share information among our subsidiaries that we own or control, but it is always protected under the terms of this privacy policy.

This privacy policy applies only to the Projects In Knowledge Web site. You should read the privacy policy at each Web site that you visit after you leave our site. We are not responsible for how other Web sites treat your privacy, once you leave the Projects In Knowledge site.

Privacy Policy Changes
If we change our privacy policy, we will post those changes on this page. Users should check this policy to keep abreast of any changes.

Information We Collect
In this section of our privacy policy, we discuss the different types of information we may collect about you, and the ways in which we collect them.

Information We Collect from Unregistered Visitors
Visitors to our Web site can access the Web site's home page and browse the site without disclosing any personally identifiable information. We do track information provided to us by your browser, including the Web site you came from (known as the "referring URL"), the type of browser you use, the time and date of access, and other information that does not personally identify you.

Information We Collect When You Register
Customers registering on our Web site for continuing medical education activities we provide are asked to provide us with identifying information, such as name, contact information, and other identifying information. On our registration screens, we clearly label which information is required for registration, and which information is optional and may be given at your discretion.

On our registration screens you will also find a “Burning Question” field. Submission of a “Burning Question” is completely voluntary. By submitting a “Burning Question,” you grant Projects In Knowledge the right to share it with faculty to consider as they prepare their continuing medical education presentations.

Listserves
When you are using a listserve—or member-only discussion board— on our Web site, you are posting a message and your user name, which is available for all registered members to see. You should not post any information to our listserves you want to keep private. It is a condition of our Web site that when participating in a listserve, you do not:

  • Restrict or inhibit any other user from using the listserve
  • Post or transmit any unlawful, threatening, abusive, libelous, defamatory, obscene, vulgar, pornographic, profane or indecent information of any kind, including, without limitation, any transmission constituting or encouraging conduct that would constitute a criminal offense, give rise to civil liability or otherwise violate any local, state, national or foreign law
  • Post or transmit any information, software or other material which violates or infringes upon the rights of others, including material which constitutes an invasion of privacy or infringement of publicity rights or which is protected by copyright, trademark or other proprietary right, or derivative works thereof, without first obtaining permission from the owner or right holder
  • Post or transmit any information, software or other material which contains a virus or other harmful component
  • Post, or transmit, or in any way exploit any information, software or other material for commercial purposes which contains advertising, promotions or marketing

By sending a message through the listserve, you grant Projects In Knowledge the non-exclusive right and license to display, copy, publish, distribute, transmit, print, and use such information. Projects In Knowledge reserves the right to terminate your access to, and use of, the listserve if you do not abide by these conditions.

Use of Cookies
Cookies are a technology used by the Projects In Knowledge Web site to identify a user as the user moves through the Web site. Your browser allows us to place some information on your computer's hard drive that identifies the computer you are using. We use cookies to track your usage throughout our Web site.

Your Web browser can be set to allow you to control whether you will accept cookies, reject cookies, or to notify you each time a cookie is sent to you. If your browser is set to reject cookies, Web sites that are cookie-enabled will not recognize you when you return to the Web site, and some Web site functionality may be lost. The Help section of your browser will tell you how to prevent your browser from accepting cookies.

Although cookies do not normally contain personally identifiable information, if you are a registered user we may associate your registration information with cookies our Web site places on your computer's hard drive. Associating a cookie with your registration data allows us to offer increased personalization and functionality. For example, you can elect to have our Web site "remember" you and bypass the registration process each time you register for one of our educational activities. Without cookies, this functionality would not be possible. Projects In Knowledge does not currently employ cookies for this use, but is considering it to make our registration processes more efficient for you.

Children's Privacy
Projects In Knowledge's Web site is designed and intended for use by adults, and is not intended for, nor designed to be used by children under the age of 18, or any other unlicensed, untrained individuals. We do not collect personally identifiable information from any person we know is a child under the age of 18.

Uses We Make of Information
In this section of our privacy policy, we identify the ways we may use information about you that we have collected.

Aggregate Data
We create aggregate data about visitors to our Web site for activity development and improvement. We also use it for market analysis. We may provide information from our Web site in aggregate form, with identifying information removed, to third parties. For example, we may tell a third party what percentage of our registered users reside in a particular geographical area. When aggregated information is provided, we pool it from many individual records and strip it of any data that could be used to identify an individual before it is used. Any third party that receives aggregated data must agree not to attempt to re-identify the people it belongs to. Projects In Knowledge does not sell any user data to any third party for commercial purposes.

Third Parties
In addition to aggregate information (discussed previously), we may share some kinds of information with third parties as described below.

  • Business Transfers: If we transfer a business unit (such as a subsidiary) or an asset (such as a Web site) to another company, we will require them to honor the applicable terms of this privacy policy.

Protection of Information
In this section of our privacy policy, we discuss the security measures we take to protect information that we have collected about you.

General Policies
We have implemented technology and security policies, rules and other measures to protect the personal data that we have under our control from unauthorized access, improper use, alteration, unlawful or accidental destruction, and accidental loss. We also protect your information by requiring that all our employees and others who have access to or are associated with the processing of your data respect your confidentiality. In addition, we have appropriate security measures in place in our physical facilities to protect against the loss or misuse of information at our site that we have collected from you.

Projects In Knowledge Employees
Projects In Knowledge employees are required to keep customer information private, as a condition of their employment with the company. Only selected, authorized Projects In Knowledge employees are permitted to access your registration information.
Employees are required to sign a confidentiality agreement. All employees and contractors must abide by our privacy policy, and those who violate that policy are subject to disciplinary action, up to and including termination of their employment and legal action.

Privacy Questions or Concerns about Our Web Site
For privacy questions or concerns about the Projects In Knowledge Web site, please contact privacy@projectsinknowledge.com.

Revision date: This policy was last updated on September 30, 2003.


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Ask The Experts

We welcome your questions, comments, and suggestions as one critical way to continuously improve the activities we offer. Use the form below to email us. In order for you to receive a response, you must provide an email address.

Answered Questions:

1. Is there any effect of Deferasirox on bones or any bony lesions have been found with the drug use in thalssemia major?

According to Dr. Taher and Dr. Cappellini, both experts in the fields of iron metabolism and iron chelation, there have been no reports of adverse effects on bone associated with deferasirox. Moreover, there is no mention of effects on bone associated with deferasirox in the October 2010 Swiss PI or the EMEA's update site. It should be noted, however, that bone loss and altered bone architecture have long been known to be associated with iron overload.1

1. Hershko C. Blood 2010;116:2405-2406.

2. What are the neurodegenerative diseases associated with excess iron?

Response from John B. Porter, MA, MD, FRCP

Transfusional iron overload and genetic HFE haemochromatosis, conditions in which total body iron is increased, are not typically associated with neurodegenerative disease. This occurs when the distribution of iron rather than total body iron content are the cause of neuro-pathology. Examples of this are Freidrichs Ataxia and Acaeruloplasminaemia.

In Friedreich ataxia, decreased iron-sulphur cluster and heme formation leads to mitochondrial iron accumulation and ensuing oxidative damage that primarily affects sensory neurons, the myocardium, and endocrine glands. Freidrichs Ataxia is caused by the abnormal expansion of a GAA repeat in intron 1 of the FRDA gene on chromosome 9, which encodes a 210 amino acid protein called frataxin.

In aceruloplasminaemia, patients typically present in adulthood with neurological symptoms such as chorea and cognitive decline, due to iron accumulation in the brain, predominantly in the globus pallidus. Increased iron deposition in the liver and other organs such as the pancreas also occurs. Caeruloplasmin is a plasma oxidase that regulates the efficiency of iron efflux from cells and catalysies the oxidation of Fe(2+) to Fe(3+) thereby promoting Fe(3+) binding to transferrin. Caeruloplasmin also stabilizes ferroportin membrane expression. In the brain, GPI (glycosylphosphatidylinositol)-linked Cp is the predominant form.

In both Friedreich ataxia (Boddaert . Blood , 110, 2007) and acaeruloplasminaemia (Skidmore , J Neurol Neurosurg Psychiatry, 2008) there evidence of syympotmatic improvement with oral iron chelation therapy.

3. I have a young patient who has hereditary haemochromatosis and beta thalassaemia trait (Hb around 9-10). He has been on weekly venesection for past year but his iron saturation remains >95%, ferritin around 300. I can't intensify venesection as he becomes symptomatic with his anaemia. Is it any role to add oral iron chelator deferasirox?

  1. The residual iron excess can be considered as minor, given that serum ferritin is only slightly increased (it would be interesting to know the initial ferritin levels and the total number of weekly venesections performed in order to reach a serum ferritin level of approximately 300). Moreover, it is likely that the increase of transferrin saturation is partly due to hemolysis (through increased serum iron).
  2. Therefore, I would not propose deferasirox therapy, in so far as side-effects of iron chelation are expected to be more important when body iron overload is only very moderate.
  3. I would keep on venesection therapy, on a lower schedule (if weekly venesections turn out to be poorly tolerated), with, for instance, one 300 mL venesection every month (or every 3 weeks), with the goal that ferritin eventually reaches around 100 and transferrin saturation becomes lower than 75% (above this threshold, potentially toxic plasma non-transferrin bound iron may appear in the plasma).

4. In compliant patients who do not achieve a satisfactory response to DFO, what factors would suggest moving to a combination of DFO and DFP and what factors would prompt you to switch to DFX?

Although the combination of DFO (twice weekly SC) plus DFP (three times/day orally) significantly increases the probability of achieving a response, this regimen may be difficult for some patients to adhere to. Advantages offered by DFX are the efficacy of this agent and the convenience of a once-daily oral regimen, particularly in patients who are having difficulty with SC administration. Of course, the side effect profiles of the two regimens also impact the choice of therapy. Neutropenia and, less frequently, agranulocytosis, have been observed with DFO + DFP, whereas side effects most commonly associated with DFX are gastrointestinal disturbances and rash.

5. What is the first step you would take in assessing non-response?

Since the primary reason for drug failure with any regimen is the patient's failure to take the drug, the first thing is to ascertain the patient's adherence to therapy. Following that, you should determine the patient's transfusion loading rate, try an alternate measure of response, and see if there are other issues, such an inadequate dose requiring dose titration, comorbid diseases that may confound the assessment of response, or the timing of oral dosing with food intake, etc, that may be a factor.

6. Are there similar issues with bioavailability of DFO and DFP that have been observed with DFX?

It's important to note that data on interpatient differences in bioavailability are scanty even in terms of DFX, and exactly what accounts for patient differences in bioavailability of DFX is unclear. With the exception of oral absorption, which is not an issue with an agent administered SC, patient differences in distribution, metabolism, and excretion could exist with all chelators. At this point, we don't know.

7. Do patients take advantage of peer support groups/family groups in your experience?

As mentioned, these groups are part of a larger program to improve adherence that includes disease education, medication diaries, and positive reinforcement from the staff for good compliance. Patients and their families derive considerable benefit from the support groups and the program has had a positive impact. But compliance still remains a problem.

8. Should the initial starting dose of chelation be based on a combined calculation of transfusion rate and body iron stores or should one start at the recommended initial dose and adjust accordingly depending on response?

This issue was only investigated for the oral chelator deferasirox. The current recommendation is a fixed starting dose based on iron intake from ongoing blood transfusions and current iron burden with subsequent individual dose titration every 3 months according to serum ferritin levels and safety markers. One important question to answer during dose assignment is whether the target is to reduce or maintain body iron levels.

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The Curriculum in Iron Metabolism & Related Disorders is supported by an educational grant from

      
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