Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Gretchen, What is NIH? Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 go to NIH or the files section of the group.. there is a section about fever study.. if you go the nih site ,,just search fever study it will come up! otherwise check the file section out! mom to kiara 5 what is NIH? I am new to this site and am wondering what the NIH study is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Hi, When each new member joins I send a welcome note... in that welcome note I welcome you... describe the group and members and I give you a summary of my son's illness from infancy until today. I also include the information and mention NIH, the National Institute for Health run by our government in Bethesda MD for research. It is a HUGE facility where research studies are initiated and funded through the US. I like to inform parents and other family members of the studies currently going on for Periodic Fevers. Dr. Kastner is the Director of the Fever Studies and the Specific Genetic Studies going on currently. Plass is the RN who works with Kastner since the fall. Beverly Barnham is the RN who use to work with us however since the studies are getting bigger with more participants they split adults and children. has pediatrics and Bev has adults. The information is ALL in the file section and there are links in the link section.... There are names and telephone numbers too. Too expedite looking in the file section and link section check below and you will see the Studies we are discussing. The website for NIH is.... www.nih.gov There is a wealth of info there. The link for the portion of NIH where we belong is: http://www.niams.nih.gov/ <http://www.niams> Periodic Fever Syndromes <http://clinicalstudies.info.nih.gov/cgi/processqry3.pl?sort=1 & search=niams & searchtype=0 & patient_type=All & protocoltype=All & institute=%25 & conditions=All> 05-AR-0014: A Pilot Open-Label Study of IL 1 Trap in Adult Subjects with Autoinflammatory Disease: A Therapeutic Approach to Study Pathogenesis. This study will examine the safety and effectiveness of interleukin-1 (IL-1) Trap for treating patients with autoinflammatory diseases-conditions with intense episodes of inflammation, such as fever, rash, or joint swelling. IL-1 Trap blocks a substance called IL-1 that may be important in causing the inflammation in these diseases. <http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_94-AR-0105.htm l@familial@mediterranean> 94-AR-0105: Genetics and Pathophysiology of Familial Mediterranean Fever and Related Disorders. This study admits patients with familial Mediterranean fever and other episodic inflammatory syndromes. The goal is to identify subsets of patients to define distinct genetic diseases and their clinical manifestations. Neonatal Onset Multisystem Inflammatory Disease (NOMID) <http://clinicalstudies.info.nih.gov/cgi/processqry3.pl?sort=1 & search=niams & searchtype=0 & patient_type=All & protocoltype=All & institute=%25 & conditions=All> 05-AR-0014: A Pilot Open-Label Study of IL 1 Trap in Adult Subjects with Auto inflammatory Disease: A Therapeutic Approach to Study Pathogenesis. This study will examine the safety and effectiveness of interleukin-1 (IL-1) Trap for treating patients with auto inflammatory diseases-conditions with intense episodes of inflammation, such as fever, rash, or joint swelling. IL-1 Trap blocks a substance called IL-1 that may be important in causing the inflammation in these diseases. <http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2003-AR-0298.html> 03-AR-0298: A Pilot Study with the IL-1 Receptor Antagonist Anakinra/Kineret in Patients with Neonatal Onset Multisystem Inflammatory Disease (NOMID/CINCA Syndrome). This is a multi-center pilot study using the IL-1 receptor antagonist anakinra to treat children with Neonatal Onset Multisystem Inflammatory Disease (NOMID), also known as chronic infantile neurological, cutaneous and arthopathy (CINCA) syndrome. <http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2003-AR-0173.html> 03-AR-0173: Studies of the Pathogenesis and Natural History of Neonatal Onset Multisystem Inflammatory Disease (NOMID). This study will examine and test patients with neonatal onset multi-system inflammatory disease (NOMID) to learn more about the cause and course of the disease. It will study the disease signs and symptoms and the possible role of a gene called CIAS1, and it will develop a database to gather information on patients with NOMID in the United States and around the world. It will also serve as a screening protocol to offer eligible patients participation in a treatment protocol, if an appropriate one is available. Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 I have been very happy to have my two sons in the study at NIH. We began seeing Dr. Kastner over a year and a half ago. We have received much valuable information from our visits and communications with the doctors there. We have not found the visits to be too difficult on the boys. All of our doctors at home agree that the study at NIH will provide the best guidance and hope for diagnosis of my boys' fevers. We know it is not and are working with the doctors at NIH to try to figure out what it is. Most of my sons' genetic tests have been negative for the known causes. It will be NIH's knowledge, experience, and research that finds us an answer – even if it's 10 years from now! Now, I have had MUCH difficulty with the new nurse there, but she is new. Hopefully she'll be forced to get her act together or be replaced soon. If not, we all just now know that she needs` to be kept on top of at all times! I hope that our complaints of one highly incompetent research nurse do not sway anyone's decision to enter the study. Her issues do not at all reflect the attitudes and professionalism of every other team member I have meet on our many visits. > > > Thank you for the welcome. All this information is a bit overwhelming. > Everyone seems to want to go to NIH, but there are such negative reactions. > I hesitate to have my daughter undergo research studies. I want help. Not > more questions. Are there other places. No one seems satisfied. > > Rose > > >From: " Fran Bulone " <fbulone@c...> > >Reply- > >< > > >Subject: RE: what is NIH? > >Date: Sat, 21 Jan 2006 13:18:40 -0500 > > > >Hi, > > > >When each new member joins I send a welcome note... in that welcome note I > >welcome you... describe the group and members and I give you a summary of > >my > >son's illness from infancy until today. > > > >I also include the information and mention NIH, the National Institute for > >Health run by our government in Bethesda MD for research. It is a HUGE > >facility where research studies are initiated and funded through the US. > > > >I like to inform parents and other family members of the studies currently > >going on for Periodic Fevers. > > > >Dr. Kastner is the Director of the Fever Studies and the Specific > >Genetic Studies going on currently. > > > > Plass is the RN who works with Kastner since the fall. > >Beverly Barnham is the RN who use to work with us however since the studies > >are getting bigger with more participants they split adults and children. > > has pediatrics and Bev has adults. > > > >The information is ALL in the file section and there are links in the link > >section.... There are names and telephone numbers too. > >Too expedite looking in the file section and link section check below and > >you will see the Studies we are discussing. > > > >The website for NIH is.... www.nih.gov > >There is a wealth of info there. > >The link for the portion of NIH where we belong is: > >http://www.niams.nih.gov/ > > <http://www.niams> > >Periodic Fever Syndromes > > > > > ><http://clinicalstudies.info.nih.gov/cgi/processqry3.pl? sort=1 & search=niams & > >searchtype=0 & patient_type=All & protocoltype=All & institute=% 25 & conditions=All> > >05-AR-0014: A Pilot Open-Label Study of IL 1 Trap in Adult Subjects with > >Autoinflammatory Disease: A Therapeutic Approach to Study Pathogenesis. > >This > >study will examine the safety and effectiveness of interleukin-1 (IL-1) > >Trap > >for treating patients with autoinflammatory diseases-conditions with > >intense > >episodes of inflammation, such as fever, rash, or joint swelling. IL-1 Trap > >blocks a substance called IL-1 that may be important in causing the > >inflammation in these diseases. > > > > > ><http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_94- AR-0105.htm > >l@familial@mediterranean> 94-AR-0105: Genetics and Pathophysiology of > >Familial Mediterranean Fever and Related Disorders. This study admits > >patients with familial Mediterranean fever and other episodic inflammatory > >syndromes. The goal is to identify subsets of patients to define distinct > >genetic diseases and their clinical manifestations. > > > >Neonatal Onset Multisystem Inflammatory Disease (NOMID) > > > > > ><http://clinicalstudies.info.nih.gov/cgi/processqry3.pl? sort=1 & search=niams & > >searchtype=0 & patient_type=All & protocoltype=All & institute=% 25 & conditions=All> > >05-AR-0014: A Pilot Open-Label Study of IL 1 Trap in Adult Subjects with > >Auto inflammatory Disease: A Therapeutic Approach to Study Pathogenesis. > >This study will examine the safety and effectiveness of interleukin-1 > >(IL-1) > >Trap for treating patients with auto inflammatory diseases- conditions with > >intense episodes of inflammation, such as fever, rash, or joint swelling. > >IL-1 Trap blocks a substance called IL-1 that may be important in causing > >the inflammation in these diseases. > > > > <http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2003-AR- 0298.html> > >03-AR-0298: A Pilot Study with the IL-1 Receptor Antagonist > >Anakinra/Kineret > >in Patients with Neonatal Onset Multisystem Inflammatory Disease > >(NOMID/CINCA Syndrome). This is a multi-center pilot study using the IL-1 > >receptor antagonist anakinra to treat children with Neonatal Onset > >Multisystem Inflammatory Disease (NOMID), also known as chronic infantile > >neurological, cutaneous and arthopathy (CINCA) syndrome. > > > > <http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2003-AR- 0173.html> > >03-AR-0173: Studies of the Pathogenesis and Natural History of Neonatal > >Onset Multisystem Inflammatory Disease (NOMID). This study will examine and > >test patients with neonatal onset multi-system inflammatory disease (NOMID) > >to learn more about the cause and course of the disease. It will study the > >disease signs and symptoms and the possible role of a gene called CIAS1, > >and > >it will develop a database to gather information on patients with NOMID in > >the United States and around the world. It will also serve as a screening > >protocol to offer eligible patients participation in a treatment protocol, > >if an appropriate one is available. > > > > > >Fran A Bulone > >Mom to ph 6 yrs old > >Waxhaw, NC > >Owner & Moderator Group > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2006 Report Share Posted January 21, 2006 Rose, NIH is very busy... People come from all over the world... And initially it usually averages 6-8 months to get an appointment. Once your physicians send a letter along with pertinent lab studies that correlate to the fevers, the nurse is suppose to review the findings with Dr. Kastner... From their you here in about 6 months. Once you go it is not so difficult. If DNA studies are done you usually hear back in about 3-4 months. Depending on the clinical picture presented from your pediatrician's letter and from the history you as your child's caregiver give to Dr. Kastner... If the initial studies are negative... They may test for the even more unusual mutations. If you have to go back because a mutation is found or because the clinical picture you describe resembles one of the genetic mutations you will be asked to come back. Nothing is negative at all... NIH as I mentioned as mentioned is a WONDERFUL place. It is the one place where EVERYONE you speak with inside the clinic we are seen at is FAMILIAR with ALL of the Periodic FEVER Syndromes. It is wonderful when you see a doc who listens and actually understands and believes everything we say. I too would climb the highest mountain for ph. And I feel like I have. From a diagnosis.... Fever starting at 5-1/2 mths old... To changes in symptoms.. To initial DNA studies which were negative.. To meningitis twice as an infant... Rashes and hives constantly... And Dr. Kastner. THE ONLY doctor who said to me ... After our initial visit with him in January.... ph just may need to be tested for NOMID... He called me about 4 months after the DNA studies were done with the results. He went over his symptoms with me... We chatted for about an hour on the phone. About a month later... He called again. He said I would like to send off another DNA study. ph seems to have some symptoms for NOMID or Muckle Wells and they are from the same mutation... A protein called Cryopyrin. I said yes.... In November I got another call... From Dr. K... And he informed me that ph does have a mutation for these disorders.... Now we need to find out which disorder.... He has labeled him NOMID, however ph seems to be a very mild case as of now compared to other children with the same diagnosis. I recently found a website owned by Kate and Bartow... They are wonderful people who are FULL of knowledge.... And I joined their group where I am now networking with a couple of members.. It seemed somewhat discouraging initially to me too... As my son does not seem to manifest many of the symptoms the other children exhibit. But it is a learning tool... And education is key. If I am aware of certain secondary disorders which may develop later... Then I can be watching... I may now have an opportunity to get my son on a medication called Ankarina through the NIH. I may be able to slow the progress of this disorder. I have learned ALL of this in a short period of time through the site these people initiated.... Looking on the bright side, I see the site as a wonderful education and support tool. I hope someday you feel the same way. There is SO much to learn about these disorders. They are not common. Years ago ALL of these children were labeled as .... NOW the lumping of the children is beginning to stop.... And that will allow our children to be cared for according to where they lie ... Auto-immune or auto-inflammatory- or neither. God Bless Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2006 Report Share Posted January 22, 2006 NIH is free. It is run on research grants. Staying over is also free. The Children's Inn is the special (and I MEAN SPECIAL) place on the NIH property, funded through donations where our children stay... There are children from ALL over the world... With special and rare disorders. Some live there over a year. It has game rooms, a huge kitchen with lockers for dry goods and ovens, refridge etc... There is internet access... There are sitting areas... And small areas near the rooms where you can make free calls all over the US. The place has many informed volunteers.... That help you throughout. There are play areas for younger kids both indoors and out. The Children's Inn is a comfort after these kids go to the clinic for testing and treatment. http://www.childrensinn.org/ Check it out when you have time God Bless Fran Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
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