The content on or accessible through Medpedia.com is for informational purposes only. Medpedia is not a substitute for professional advice or expert medical services from a qualified health professional.
Read more
Medpedia Answers
(Oncology/Cancer)Medpedia Answers is a platform for asking and answering questions about health and medicine. Read more.
Is anyone aware of a clinical trial regarding familial appendiceal carcinoid tumors (genetics as opposed to treatments)? The NIH has one but it excludes patients and family members who have an existing known genetic condition.
There is very little in the way of research regarding familial appendiceal carcinoid tumors. The existing situation is that the family is a Lynch Syndrome family but it seems apparent that the family carries to familial syndromes, albeit lack of research on the genetics of familial appendiceal carcinoid tumors and also co-existing with Lynch Syndrome. Anyone?
asked Jul 29, 2010 at 05:22PM in Oncology/Cancer
-
0Votes
answered Jul 29, 2010 at 10:59PMA search at Clinical Trials shows up 7 active ongoing trials some with Avastin. Here is the link FYI.
http://www.clinicaltrials.gov/ct2/results?term=familial+AND+carcinoid+tumors-
It's quite possible I did not make this clear, but my questionis not treatment related but specific to genetics eg. mutations. MEN1 is one of the neuroendocrine-related mutations in carcinoids, however this does not apply to appendiceal carcinoid tumors- familial. Thanks so much for your search/response.Sandi Pniauskas commented Jul 30, 2010 at 07:38PM
-
-
0VotesSandi,
The key is the search terms used to get more options and trials listings.
My first query resulted in the following :
The term, familial appendiceal carcinoid tumors, must be relaxed or trimmed to find documents
Trim term to: familial AND carcinoid tumors
Trim term to: appendiceal AND tumors
Trim term to: carcinoid tumors
Trim term to: familial AND tumors
Trim term to: appendiceal
Trim term to: familial
Trim term to: tumors
Recognized Terms and Synonyms:
familial appendiceal carcinoid tumors: 0 studies
carcinoid tumors: 121 studies
carcinoid
well-differentiated endocrine neoplasm
appendiceal: 9 studies
carcinoid: 121 studies
well-differentiated endocrine neoplasm
familial: 3744 studies
families
tumors: 26836 studies-
Thanks between myself and another researcher (using the search terms as you have mentioned) we still came up with the one clinical trial. I will though do a double check again, just in case. ThanksSandi Pniauskas commented Jul 30, 2010 at 07:27PM
-
I did another check, with thanks and appreciation. Interestingly there is one study MEN1/SDHD which may be interesting if it is still open. As well, posted yesterday is a new study not yet enrolling. Thanks, because your message was very helpful in spurring me on to do another check. 2 new potential sources, thanks..Sandi Pniauskas commented Jul 30, 2010 at 08:19PM
-
-
0Votes
answered Jul 30, 2010 at 10:20AMAnother good place to look would be Google Scholar or Pub Med. A search for your terms will identify Universities and researchers studying this question, as well as give their contact information. You can then write them with your inquiry and ask for direction from them.
Best of luck.
Judy Stone, MD-
Dr Henry Lynch Sr et al had done one study which has agreed with most other studies that these are two separate and distinct genetic syndromes. However, there has been anecdotal and individual data showing families with co-exisiting genetic syndromes. Rarer, than rare and that is why the information if difficult. Good suggestion though, as I need to find that one particular researcher who may have an interest in co-existing multiple genetic syndromes. Most of the funding as usual is focused on the more common genetic syndromes. I have check NORD without success. Thanks for the response and recSandi Pniauskas commented Jul 30, 2010 at 07:35PM
-
-
0Votesanswered Jul 30, 2010 at 09:53PMSandi,
Thanks, I am more interested in new drugs and therapeutics, glad to know that it helped you find more studies. I suggest that you search at ScienceDirect to have more hits with different combination of words/terms. There are several recent papers about MEN1 mutation. Wish you all the best.
Sign-in
to post an answer to this question.
Related Questions
- Can anyone suggest a physician who can treat CRPS/RSD in Philadelphia/suburbs?
- Can homotaurine prevent memory loss and/or combat Alzheimer's Disease?
- Does anyone have strong views on neurogenesis?
- Does anyone have a family member diagnosed with Childhood Ataxia with Central Nervous System Hypomyelination/Vanishing White Matter?
- Anyone have experience with Bursitis (hips)?
- Is there a genetic or familial component to scoliosis of the spine?
- Has anyone had problems with the biologic Orencia?
- Does anyone know of human genetic engineering/DNA splicing or the creation of hybrids or chimeras that is going on (probably illegally) in this country or abroad? No names needed, I'm trying to write an article. Thanks!
- Does anyone know the X-linked pigmentary Reticulata Disorder with Systematic manifestations?
- Has anyone else with TGA had a baby?
- »» See All
The content on or accessible through Medpedia.com is for informational purposes only. Medpedia is not a substitute for professional advice or expert medical services from a qualified health professional.
Read more
Natural History of Familial Carcinoid Tumor
http://clinicaltrials.gov/ct2/show/NCT00646022?term=familial+AND+carcinoids&rank=1
This clinical trial, however, excludes those with a known/existing genetic condition (syndrome) in this case the known genetic syndrome is Lynch Syndrome which excludes participation.
I need to contact the researcher himself as I am very curious, given the rarity of the condition why a pre-existing genetic mutation would be an exclusion.