Forums, Discussions, e-groups, and Listservs Dealing with Clinical Trials

If you join one of these support groups, please mention that you found their group through Medconsumer.info.

• ADVR-AdvancedViralResearch.  "First Experienced Biotech CEO in ADVR's history joined in Feb 2004 --First Phase II US FDA Clinical Trials In Co.'s History Begun Recently --Clinical Trials Results out of Israel to be Presented at Conference Jan. 22, 2005 --Broad Indication Immunomodulator Drug (AVR118) has 11 patents issued including Basal Cell Carcinoma, Anemia, Genital Herpes, Human Papilloma Virus (HPV), etc.
  --8 patents applied for including MS, Lupus, Melanoma, and Rheumatoid Arthritis --HIV Patent isssued in China "  Yahoo! group.
• AMG706.  "This group is for people interested in the experimental cancer drug AMG 706.
  
  AMG 706 is Amgen's first small molecule anti-cancer therapeutic candidate, which selectively inhibits multiple kinases involved in the formation of blood vessels. AMG 706 appeared to reduce vascular permeability and blood flow in human tumors in a Phase 1 trial. Early clinical data shows signs of tumor regression with promising preliminary safety data that allows for combination therapy. (from Amgen.com)
  
  Phase I trials are underway at John Wayne Cancer Institute (Santa Monica, Ca.) and at M.D. Anderson Cancer Center (Houston, Texas)."  Yahoo! group.
• Adenoid_Cystic_Carcinoma_Organization.  "Adenoid Cystic Carcinoma Organization shares information including research, clinical trials, hospitals and alternatives...Adenoid Cystic Carcinoma Organization International's Information Group shares information and hope. All issues are discussed in an atmosphere of support. Current research, clinical trials, cancer facilities, alternative medicine, organizations that help with expenses for cancer treatment and other information relevant to Adenoid Cystic Carcinoma."
• Advancedviralisreticulose.  "Clinical trials begun in Israel on terminally ill patients --Trials are for salvage therapy of HIV --HIV clinical results COULD BE available in near future --Recent CEO change will clear way for a CEO with Biotech management experience to enter the picture --Yonkers, NY state-of-the-art production facility has replaced older Bahamas facility --Corporate partnership expected in near future; Many pharmaceutical firms are desperately seeking a promising drug to replace their blockbuster drugs coming off patents --10 patents issued including basal cell carcinoma, anemia, genital herpes, plantar warts, HPV, herpes zoster (shingles) etc. --8 patents applied for, including MS, Lupus, melanoma, and Rheumatoid Arthritis --Scientific Advisory Board has prestigious scientists, physicians and researchers --Two insiders made personal investments totaling $2.25 million at very favorable terms to ADVR."
• Anvirzel.  "A discussion forum for persons interested in the history of Ozelle Pharmaceuticals, Inc., Galesburg, IL., and their progress in taking Anvirzel to clinical trials.
  
  NOTICE: "Anvirzel" is claimed as a federal trademark by Ozelle Pharmaceuticals, Inc. and is used in this forum for discussion purposes only.There's an outfit down in Honduras that makes a claim that the Peoples Republik and Paradise of Honduras has issued them a trademark for the same name.
  
  Yet another faction operating out of the ancient nation of Turkey claims they have a trademark for the word "Anvirzel."
  
  There may be (and probably are more) factions out on the planet that likewise claim the crown (trademark/name) "Anvirzel."  Yahoo! group.
• Apocp2000.  "The aim of the Asian Pacific Cancer Prevention Group is to promote exchange of ideas regarding all areas of cancer prevention and to stimulate research and practical intervention approaches. The scope is wide-ranging, including descriptive, analytical and molecular epidemiology, experimental and clinical histopathology/biology of preneoplasias and early neoplasias, assessment of risk and beneficial factors, experimental and clinical trials of primary preventive measures/agents, screening approaches and secondary prevention, and all aspects of cancer prevention education."
• BeingSick · A global community of loving people who understand what its like to be sick or care for a loved one.  "We are a community of loving supportive people who understand what its like to be sick. We live with illness, injury, disability, or care for those that do. This group is a place where you are free to be yourself. Share your frustrations about being sick, friendships, family, and just about anything! We are the family who understands when no one else does! We live your life too! You are welcome to post in HTML, colors, send links, web pages, poems, inspiration, e-cards, jokes, chat in our chat room anytime! We are non-denominational, welcoming all races, ages, religions and cultures. We know how tough life is being sick, and we care. There is support for you here anytime you need us. You are not alone."  Yahoo! group. 
• Bio-mining.  "This group is dedicated to discussing data mining in the life sciences, covering areas including microarray analysis, clinical trials evaluation, ..."  Yahoo! group.
   
• Bipolar-children.  This is a Newsletter/Announcement/Discussion List For Parents of Bipolar Children...This is a Newsletter/Announcement/Discussion List for parents of Bipolar Children. Here you will find resources, links, legal updates, clinical trials info, and anything else relating to
  needed information for parents of bipolar children. 
  
  Just one of a growing number of resources to help parents and families who deal with this issue on a day-to-day basis. Discussion is permitted as well!
  
  The newsletter will come out as often as new information is found, so it may be pretty often!
  If you have information to submit -- please email me, Muriel Tomer, at muriel@bipolar-children.org and I will post it in a timely manner."
• CancerDaily · Cancer News & Information List.  "Cancer news and information including general cancer news, clinical trials, support groups, Internet resources, and other information for cancer patients, caregivers, and medical professionals."
• Cancer Family Circle.  "This group is for people of all ages to share information, experiences, questions and concerns relating to all forms of Cancer. It's a place where people who have Cancer, have survived Cancer, or have loved ones with Cancer can meet others who know what it is like and give support and advice. My hope is that we will get to know each other and become a family circle of caring, understanding and supportive people.
  This group is not meant to replace the most reliable source of information--YOUR DOCTORS! If you get information from the group you want to follow up on, write it down or print it out and take it with you to your next doctor appointment.
  There is a web site for this group that has information about forms of Cancer, types of treatments, medications, and clinical trials. It also has sections for sharing experiences/stories, poetry, venting and asking questions."  Yahoo! group.
• Carcinoid.  "CARCINOID is a moderated, educational discussion list for patients, parents, friends, researchers, and physicians, to discuss clinical, nonclinical issues and advances pertaining to Carcinoid Cancer. This includes patient experiences, hormone induced psychological issues, new research, clinical trials, and discussions of current treatment practices. The listmanager, conscious of the limited time medical professionals can spend online, has setup this list to help those professional subscribers gain information from the body of listmembers on common complaints, side effects of the carcinoid syndrome, sandostatin, serotonin, and other treatments and diagnostic tests.
  
  Please be aware that there exists a list for Islet Cell, VIP secreting NET's, aka Vipomas. search for IsletCellTumors on Yahoogroups or send an email to IsletCellTumors-subscribe@egroups.com to join. This (carcinoid) list is for productive and non productive Carcinoid tumors only.
  
  The listmanager is Charles L Hamilton, Houston, TX (chasm@texas.net), a 28 yr survivor of this disease and one who enjoys his outdoor shooting sports. There are perhaps 6 others on this list who have survived this disease an equal or greater length of time (post pathology Dx)
  For the most encyclopedic site on carcinoid on the internet, it is strongly suggested that you go to http://www.carcinoid.org and spend a day or so there. You will find a superb glossary there also. Thanks to Monica Warner of the Carcinoid Cancer Foundation."  Yahoo! group.
• Crpindia · Clinical Research Professionals - India.  "This is a group of professionals qualified by education, and training (may be graduates, post-graduates and PhDs in any stream of science or Doctors (allopathic, homoeopathic or ayurvedic) conducting clinical trials or inclined to pursue a career in clinical research. This is mostly an interactive forum to share knowledge and experience among the group."
• Clinical_Trials.  "Treatment and Cure for Degenerative and Atrophic diseases including Alzheimers, Lewy Body Disease, Parkinsons, Picks, Prion, MS, ALS, Shy Dragger and more. This includes organically caused dementia, delirium, and some types of cancer and organ depletion. Treatment includes cell replacement therapy, stem cell research, embryotic, adult, and umbilical stem cell treatment."  Yahoo! group.
• Clinical Trials Information.  "Here's the place where you can come and chat or find info about clinical trials and new medical therapies for various diseases."  Yahoo! group.
• ColumbiaCornellAACTUCAB.  ColumbiaCornell AACTUCAB.  "The community advisory board for the Columbia/Cornell Adult AIDS Clinical Trials Unit in New York City."  Yahoo! group.
• Cpgdna.  "This low volume email list provides announcements from the CpG ImmunoPharmaceuticals company.  This low volume email list provides announcements from the CpG ImmunoPharmaceuticals company.
  
  CpG ImmunoPharmaceuticals (CpG) is developing innovative therapeutic and prophylactic products that stimulate the immune system to treat cancer, infectious diseases, allergy and asthma and help protect against opportunistic infections after cancer chemotherapies. The Company's products are based on CpG DNA™, a novel technology that promotes white blood cell proliferation and rapidly activates both cellular and humoral immune responses. Discovered in 1994 by Dr. Arthur M. Krieg, Co-founder and Chief Scientific Officer of CpG, this innovative technology is protected by the Company's extensive patent portfolio.
  
  To date, CpG researchers and collaborators have published over 50 research papers on CpG DNA™ and its applications, have confirmed the efficacy and safety of CpG DNA™-based products in animal models and have developed and optimized CpG
  DNA™ sequences for use in humans. CpG expects to initiate at least six Phase I/II clinical trials for its lead products in 1999, starting with a hepatitis B trial now underway.
  
  The company maybe contacted directly via http://www.cpgdna.com/"   Yahoo! group.
• CurcuminForCF.  Curcumin for Cystic Fibrosis.  "Curcumin, a substance found in the underground stems of plants in the genus Curcuma, has been shown to eliminate symptoms of cystic fibrosis in mice. Human clinical trials are being organized, but few people will be allowed to participate in them and it will be years before curcumin will receive official recognition as a treatment for CF, even if it turns out to work.
  
  Meanwhile, many CF patients will want to try curcumin for themselves. This Yahoo group is a forum for exchanging information about such self-experiments. We will be especially interested in determining effective doses of curcumin and of the bioavailability enhancers which probably need to be combined with it." 
• Erc · Endometriosis Research Center.  "Welcome to the Internet's largest electronic Endometriosis support group, sponsored by the Endometriosis Research Center. The ERC Listserv is part of our organization's global support program and is available for women, girls and all interested parties worldwide to communicate, share experiences and learn about Endometriosis along with topics related to the disease. The ERC is an established, 501(c)3 non-profit organization which operates on an International level to improve the quality of life for those affected by the disease. The ERC is globally recognized for our vast efforts at raising awareness about Endometriosis; for establishing Endometriosis-related legislation; for providing timely, accurate and unbiased education on all aspects of the disease; and for facilitating research and clinical trials."
• Experimental and Unconventional - New Therapies for Colon Cancer.  "Welcome to the Experimental and Unconventional Therapies Colon Cancer Board. This board is for those enrolled in or interested in clinical trials, or those using or interested in using unconventional techniques for treating colon cancer. It is primarily oriented towards stage IV disease. What are you doing and why? If you’re in a trial, what is it, what side effects are you experiencing, and of course the million dollar question, “does it work for you?"  Yahoo! group.
• GBMsource · GBM (glioblastoma multiforme).  "Welcome to GBM, a group for patients, caregivers, family and friends affected by glioblastoma multiforme. I created this group in honor of my father who was diagnosed with GBM in May 2002. This group is a resource for people to share info about diagnosis, treatment, physicians, research, clinical trials and everything else that comes with the territory."  Yahoo! group.
• Ghdkidsnowadults · GHD kids now adults - Growth Hormone Deficient Adults who want to talk.  "I have started this club to hopefully find some adults who were treated for GHD as a child and are currently not being treated. I recently found out that I still need Growth Hormone as an adult even though I have stopped growing! I have not had treatments in 10 years and my health has suffered. My GH levels are near nothing and I will soon be starting treatments again. Please come join me for a chat if you are curious. There are many clinical trials out there looking for people like us. We can get free treatment and health care for joining a clinical trial. Contact your local hospital for more info. OHSU in Portland, OR. is currently searching for people in our situation."  Yahoo! group.
• Glioblastomasupportgroup.  "glioblastoma support group...This group is for Adult patients newly diagnosed with GBM type 2 3 or 4 brain tumors -- to discuss therapies and the side effects experienced as well as to share leads on promising experimental clinical trials seeking to enroll GBM patients."  Yahoo! group. 
• Gvkbiosciences · GVK Bio.  "gvk bio is a Contract Research Organization which offers a complete range of integrated services in the areas of Informatics, Medicinal Chemistry, Process R&D, Pre-Clinical Development and Clinical Trials to address the needs of global biotech and pharmaceutical companies.
  
  gvk bio is based in Boston, USA with research facilities in Hyderabad, India."  Yahoo! group. 
• HiSciMedResearch2.  "HIDRADENITIS SUPPURATIVA (HS)  INVERSE RECURRENT SUPPURATION (IRS),
  
  HS/IRS is an incurable, disabling skin disease affecting an estimated 1 in 500 of the population. HS causes significant pain, scarring, sinus tracts and recurrent discharge, and has a profound negative impact on a patients' quality of life. There is no known cause for the condition and it is notoriously difficult to treat. Inadequate research, a lack of evidence-based treatment, and a remarkable shortage of clinical trials has prevented the advancement of disease-specific knowledge.
  
  Recently (1) HS has been defined as Inverse Recurrent Suppuration (IRS), as this is a more accurate description of the recurrent lesions resembling boils which do not respond to conventional treatments.
  
  Take good care of yourselves and each other:
  
  Rob (Australia) and Michelle (USA)  http://hs-research.com/"  Yahoo! group.
• IBISecg.  "This is a forum for professionals from any and all areas involved in utilizing electrocardiograms who would like to discuss emerging technologies available for ECG reading/storage/interpretation as well as the transfer of ECG data. Including recently implemented FDA regulations for the digital transfer of ECG data for Clinical Trials. Welcome to MDs, CROs, Pharma Companies, Informatics, QA Validation, and all others with involvement in the ECG data process..." Yahoo! group. 
• Iressa · Iressa Participants.  "Established February 2002 to discuss experiences with the AstraZeneca drug Iressa.
  
  This drug is currently in clinical trials for treatment of Non-Small Cell Lung Cancer. It is also available under an expanded use program directly from AstraZeneca: http://www.astrazeneca.com.
  
  For many, Iressa offers a new weapon in the fight against Lung Cancer. Iressa is an Epidermal Growth Factor Inhibitor and is designed to slow or reverse tumor growth. Side effects are minimal and include an acne-like rash as well as diarrhea."  Yahoo! group. 
• Leukemia-research.  Chemotherapy and Stem Cell Transplants.  "This group focuses on bone marrow disorders, including leukemia, myelodysplasia, and aplastic anemia. Question/Answers and support for patients/families are available, as well as discussion of therapeutic strategies and research. We focus especially on the latest results of clinical trials, involving new drugs and drug combinations. We also include discussion of bone marrow and stem cell transplantation, including a reduced intensity outpatient approach which appears to work as well as conventional high dose approaches with less toxicity.
  
  Please join us, and feel free to ask any questions. The audience includes patients and physicians, so you are sure to get different kinds of help for your individual situation."  Yahoo! group.
• Lennoxgastaut.  Lennox Gastaut.  "Welcome to our group! If you are here, then most likely, someone you love has been diagnosed with Lennox Gastaut Syndrome, one of the most severe forms of epilepsy. Neurologists and literature paint grim pictures as to the prognosis for our children, but there is much hope! Clinical trials are underway to find viable treatment options, as we know that the usual line of anti-epileptic drugs do little to help our kids. Please join me in sharing information, neurologist referrals, and stories to support each other in our search for the best possible treatment options for our children!
  
  The Current "Front Page Star" is my son, Jimmy! He is the light of our lives, and in spite of all the medical issues he is facing, he is always smiling!"  Yahoo! group.
• Lung Cancer Online Support Group.  "CANCER! You have lung cancer or a loved one was just told the news. Now what?
  
  This is an online support group for lung cancer patients, their families and their friends. We are not medical experts. We advocate following your doctor's advice and we encourage people to get second opinions.
  
  Members on this group can exchange information about clinical trials, diagnosis, treatments and concerns in a spam-free environment. The only advertisements permitted are non-profit fundraising efforts to raise money for lung cancer research.
  
  As a member, you have access to features such as the archived messages, calendar, chat room, and links. The files and photo sections can be used to post in celebration of or in memory of the battle against lung cancer.
  
  The chat room is available 24/7. If interested in moderating a chat, please set up a time and a topic to be discussed on the calendar, then send out an e-mail reminder to the group. As the host, you would enter the chat room early in order to meet and greet members as they enter the room."  Yahoo! group.
• ME-AFS.  "Middle East Working Group on Allergic Fungal Sinusitis...A multidisciplinary team of medical professionals dedicated to further our understanding of the prevalence of this condition in the middle east, establish and promote specific guidelines and procedures for the diagnosis of AFS, and conduct clinical trials for different management strategies."
• MPIBBI.  MPIBBI is for women who have survived breast cancer/disease and have been injured with breast implants.  "For years we have watched as the American Society of Plastic Surgeons and implant manufacturers used mastectomy patients as "poster girls." Many of these women testified at the FDA saline implant hearings in March, stating that implants helped them recover and move on with their lives.
  
  As mastectomy patients who had implant reconstruction, we object to this. We have both been damaged by implants, and Pam by a latissimus dorsi flap reconstruction as well.
  
  We have formed a group, Mastectomy Patients Injured by Breast Implants (MPIBBI), in an effort to raise awareness about the risks to patients such as ourselves.
  
  Did you know, for instance, that the complication rate of saline implants in Mentor's 3-year clinical trials (implants which were approved by the FDA) was 43% for augmentation patients, and a whopping 73% for mastectomy patients? For McGhan it was 71% and 84% over 4 years.
  
  Drop either or both of us a line if you are interested in this subject and would like to learn as much as we can from each other. (probably via an egroup which would be accessible via archives or by email)
  
  Plastic surgeons need not apply. Thank you.
  
  Pam Dowd (spudnik@magiclink.com)
  Eileen Swanson (sosalines@aol.com)"  
• Maculardegenerationintl.  "Provides information for persons and families affected by the eye disease called Macular Degeneration, juvenile and age-related...Macular Degeneration International (MDI) is a special non-profit organization dedicated to serving the needs of persons with early onset (juvenile) or late onset (age-related) macular degeneration. MDI is an international organization dedicated to meeting the special lifestyle needs of individuals affected with macular degeneration and their families. MDI is also committed to providing educational and support programs to help people affected with macular disease effectively cope with their vision-related problems.
  
  MDI also provides information on current medical and research information including the most current research findings in areas of nutrition, genetics, cell transplantation and clinical trials from around the world."    
• Medconsumerinfo.  "Medconsumer.info is your starting point for searching the Web for medical information. This forum exists for you to discuss, ask questions, and answer questions about any aspect of health, healthcare industry, and any aspect of being a patient. Please take whatever advice you receive through this forum to your doctor before changing or initiating any medically-related behavior."  Yahoo! group. 
• NewsWorthy.  BiotechWatch NewsWorthy, a daily wrap of the biotechnology sector covering clinical trials, drug development, and biotech deals.  "BiotechWatch NewsWorthy is a daily wrap of the biotechnology sector covering clinical trials, drug development, and biotech deals. BiotechWatch Newsworthy is brought to you by BiotechWatch and The Trout Group. If you wish to join, please e-mail us with your name and company affiliation at trialview@biotechwatch.com."  Yahoo! group. 
• Nhl · Non-Hodgkin's Lymphoma Cyberfamily.  "Founded in 1996 our list is for Non-Hodgkin's lymphoma patients and care givers alike. Our purpose is to provide support, caring, information about lymphoma, and living with lymphoma. Discussions cover the full range of standard treatments, clinical trials, and technological advances in the treatment of non-hodgkin's lymphoma. The focus is on modern scientifically based medicine but discussions occasionally include alternative and complementary treatments."  Yahoo! group.
• Pancreatitis_related_cf.  "Hello! This group was created for the purpose of bringing all those together that have pancreatitis due to Cystic Fibrosis. In my years of researching the internet for information about my particular type of cf, I have yet to talk to someone that has the same symptoms as I do. I have been told by my physician that I am considered the minority of the minority and there probably will not be any clinical trials for my type of disease. The reasoning given for this was that people are not dying from my type. So it seems the search never ends for answers to this thing. Anyone and everyone is welcome to join this group."  Yahoo! group.
• RA-SUPPORT · Rheumatoid Arthritis, Lupus, Fibromyalgia.  "This is a list for those suffering with rheumatoid arthritis, lupus, fibromyalgia, or other rheumatic conditions. Autoimmune diseases tend to go hand in hand, so many of us have more than one diagnosis. Family members and loved ones are also welcome to join us.
  
  We are not health professionals and cannot give medical advice; however, we share our personal experiences with different drug therapies and pain management and coping strategies. Research articles are posted and discussed for those who want more in-depth knowledge.
  
  RA-SUPPORT is a place to seek friendship, support, or a shoulder to cry on. It is OK to whine - we expect and tolerate it. Jokes and off-topic conversations are allowed but should be marked with an "OT" somewhere in the subject line. Flaming is absolutely unacceptable. Selling or advertising goods or services is strictly prohibited.
  
  Current research articles are posted as well as information on clinical trials for new treatments. If you want to learn more about these conditions without participating, go to our Web site for frequently updated medical information."  Yahoo! group.
• Research_across_america  "Research Across America...Welcome to Research Across America! Have you ever participated in a Clinical trial? Share your experience here. Are you interested in volunteering for a new study? We send out updates every week for current and upcoming studies here in N.Texas. Participants in the trials will recieve study medications, study related medical care, and will recieve financial compensation for their participation. All studies are conducted in the Dallas,TX. area. For more information on any study listed in this group, call us at (972)4-DOCTOR. We hope you find your stay here helpful and informative. Feel free to ask questions, and post often, and don't forget to check out the chat room!"  Yahoo! group.
• Roadminduforum · Roadmind University Online.  "We are a private mental health research discussion group. Our membership is restricted to mental health professionals, police, military, and those interested in mental imagery research.
  
  Roadmind University Onine Forum is presently conducting Post-Traumatic Stress Disorder (PTSD) clinical trials in Police Officers and Veterans, for medical journal publication.
  
  Contact us at roerich@myway.com or 740-283-4520 if you would like to participate in the stress and trauma research study."
• Rosacea-research-foundation.  "For supporters of the Rosacea Research Foundation. The Rosacea Research Foundation is a non-profit organization dedicated to funding novel research on the underlying causes of rosacea, analyzing triggers for rosacea flares, and finding effective treatments that address the root causes of the disorder. The foundation's primary objective is to raise funds for cutting-edge research and human clinical trials. Membership of this email group is restricted to those who have donated to the RRF. ( http://www.rosacea-research.org/donate.htm)."  Yahoo! group.
• SalvageTherapies.  "This group is created for people who have been told by their doctors after a genotype or phenotype test that their HIV virus is resistant to protease inhibitors, nucleoside analogs and non nucleoside analogs. This population is a growing one and one that needs other options to survive HIV. This group will provide information about clinical trials on new HIV medications that may work for multi drug resistant virus.
  Go to http://www.SalvageTherapies.org for more information."  Yahoo! group.
• Think_gcp_glp.  "hi, this is a platform in GOOD FAITH to talk about GOOD CLINICAL PRACTICES in BA / BE, Clinical trials, the regulatory requirements, the to do's and not to do's, views about current happenings, reviews, bioanalytical difficulties, 483 etc and all related concerns."  Yahoo! group. 
• Trial-simulator.  Trial Simulator.  "The Clinical Trial Simulator (CTS) is a free software package that can simulate Randomized Controlled Clinical Trials (RCTs). With the CTS a user can explore aspects of the design, conduction and analyses of RCTs.
  
  Current version is 1.0
  
  For more information and to download the latest version of the program please go to www.randomization.org."  Yahoo! group. 
         

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