The Office of Rare Diseases Research, National Institute of Health, is sponsoring a workshop entitled “Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data,” which will be held in the DoubleTree Hotel in Bethesda, Maryland, on January 11-12, 2010.

The workshop objective is to discuss the development of an infrastructure for an internet-based platform with common data elements utilizing a federated rare disease registry able to incorporate:
1. Existing rare disease registries
2. Patient organizations with no registry looking to establish one
3. Patients with no affiliation with a support group looking to belong to
a registry

The expected outcome of the workshop is to gain acceptance of the concept of a federated rare disease patient registry and participation in creating this patient registry from as many curators of patient registries and other stakeholders as possible. Participating stakeholders will discuss harmonizing standardized common data elements, vocabulary, and open source software to enable the exchange of data and information to facilitate research collaborations. The purpose of this effort is to establish a rare disease registry to benefit the rare disease patient and research communities.

A link to the draft agenda is available at the bottom of the registration page http://www.rarediseases.info.nih.gov/patient_registries_workshop/addcontact.aspx

For additional information please contact: Yaffa Rubinstein (ORDR), 301-402-4338.

Sign Language Interpreters will be provided. Individuals with disabilities who need reasonable accommodation to participate in this event should contact Yaffa Rubinstein (ORDR),  301-402-4338 and/or the Federal Relay (1-800-877-8339).

Possibly Related Posts:

• Flu Preparedness Advice
• H1N1 Flu prevention
• Planning For Your Pets/Animals in a Disaster
• My Uncle and www.MyelomaForums.com
• RSS Feed aggregator for myeloma blogs

More information:

GROUNDBREAKING DISASTER PLAN FOR MOORE COUNTY’S ANIMALS

On August 22nd, the County Animal Response Team (CART) will be hosting an invaluable event for those owning or caring for pets and domesticated animals in Moore County. A free showing of the 2008 Accolade Award-winning documentary, “Katrina Tails,” will be followed by a presentation and discussion about Moore County’s newly-revised Animal Response Plan. The event will take place at the Owens Auditorium at Sandhills Community College beginning at 2pm.

Doug Harris, a Katrina victim, remembers being asked to leave his pets behind: “We were informed that buses would be taking everyone to higher ground and we would not be able to take our pets with us,” he said. “The worst was being forced to walk away from my beloved dogs who loved and protected us for years and would never have done that to us for any reason.”

We are all haunted by the TV footage and photos of scared and hungry animals left behind in the wake of Hurricane Katrina. Long after the flood receded, the heartbreak continued as people searched for their lost pets.

Back in 2006, President George W. Bush signed the Pets Evacuation and Transportation Standards (PETS) Act into law.

This landmark legislation requires local and state disaster plans to include provisions for household pets and service animals in the event of a major disaster or emergency.

With more than 358 million pets in the country residing in 63 percent of American households, the PETS Act helps ensure that Americans never again are faced with the choice of abandoning their pet and finding their way to safety or staying with their pet and remaining in a hazardous and potentially life-threatening situation.

Moore County’s Animal Response Team is chaired by Scot Brooks, the County Emergency Manager and Deputy Director of Public Safety. It brings together representatives from the NC Department of Agriculture, the County Department of Animal Operations, the Fire Department, the NC Cooperative Extension Service, the NC Wildlife Resources Commission, the NC Veterinary Alliance, the American Red Cross, the Veterinary Medical Assistance Team, and Moore County’s Pet Responsibility Committee.

Over the past two years, the Team has met and worked on an Animal Response Plan which considers not only pets and service animals, but all domesticated animals in Moore County. It has also included provisions for wildlife.

Plans have been made with Southern Middle School in Aberdeen designating it as a “Co-Located Shelter,” that is, a shelter that accepts both people and their pets.

Meetings have been held with a group of local veterinarians and decisions are being finalized regarding locations for the care and treatment of sick and injured animals in a disaster or emergency.

Contact information for local, State and National animal rescue resources has been compiled for quick access. A plan for a database of local volunteers to help with the animals in an emergency is underway.

The event at the end of August is designed to help residents prepare, plan and stay informed regarding the safety of their pets and animals in a disaster.

Members of the CART will be on hand at the event to answer questions and a number of booths will distribute related information. The Moore County CAMET (Companion Animal Mobile Equipment Trailer), a vehicle designed to quickly enable the setup of an emergency pet shelter will also be on display for the public to see, as will an equine ambulance designed to transport injured horses. Residents may also talk to a CART representative about signing up to be a member of the disaster volunteer pool.

In these uncertain times, there is one thing we can unfortunately be sure of: there will be emergencies and disasters. Animals and humans are profoundly impacted by these unexpected and many times unpredictable events. However, with advance preparation by individuals and government agencies working together within a community, the better everyone is able to effectively respond to the crisis.

For more information regarding the event, please call Animal Services at 910-947-2858.

Possibly Related Posts:

• Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data
• Piles of stuff to do
• Kittenocity
• Homemade Vanilla Ice Cream Recipe – No Eggs – No Cooking
• My Uncle and www.MyelomaForums.com

My uncle Darryl Ramsey was recently diagnosed with Stage 3 Multiple Myeloma and was told that he has aprox 1 year to live.  However, my uncle feels that Chemo and Radation are a waste of time because he now knows he has been sick with Multiple Myeloma for over 10 years and thinks he is still here today because of the fact that he was the type of person to refuse going to doctors and he for years started jucing and eating better every day.  Like most people the first thing my uncle did was a Google search and he found nothing but grimm information.  I started www.myelomaforums.com because I wanted him and others like him to have access to information from other people so that him and others like him know about all the best treatments and have access to all the answers.  However, the hardest part of getting a sucessful forum started is getting people and content.  I am here to ask everyone to please sign up with www.myelomaforums.com as well because the more your stories are out there the more people we can help.

Thanks,

Andy

P.S. Beth your’re a sweetheart and thanks for the kind email and willingness to help.

Possibly Related Posts:

• Warm weather and shoeless feet
• Lingering effects of peripheral neuropathy
• The White House
• Myeloma Planet – the list of every myeloma blog in the world
• Feeling “ungood”

http://www.myelomablogs.org/?type=archive

If you don’t have a blog or an RSS feed, why not set up one at healthblogs.org?

Find out what others are doing: myeloma treatment, chemo, coping

Possibly Related Posts:

• Warm weather and shoeless feet
• Lingering effects of peripheral neuropathy
• Myeloma Planet – the list of every myeloma blog in the world
• Feeling “ungood”
• Latest electrophoresis, proteins and free light chains

These labs were done 12/08/2008

IFE SERUM
(2) MONOCLONAL IgA-LAMBDAS DETECTED BY IFE.
SPE M-SPIKE 1                      0.17        g/dL
SPE M-SPIKE 2                      0.12        g/dL

IG FREE LIGHT CHAINS SERUM
                                                         Reference
  IG FREE LIGHT CHAIN KAPPA         *0.16mg/dL       [0.33-1.94]
  IG FREE LIGHT CHAIN LAMBDA         1.85mg/dL       [0.57-2.63]
  IG FLC KAPPA/LAMBDA RATIO         *0.09            [0.26-1.65]

IMMUNOGLOBULIN PROFILE
IMMUNOGLOBULIN G                  *374mg/dL       [588-1573]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN A                  *415mg/dL       [46-287]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN M                  *31mg/dL       [57-237]
TEST REPEATED TO CONFIRM
IMMUNOGLOBULIN E                   13 IU/mL       [4-269]

Possibly Related Posts:

• Warm weather and shoeless feet
• It feels like winter’s over
• Lingering effects of peripheral neuropathy
• The White House
• Myeloma Planet – the list of every myeloma blog in the world

The issue is that I plan on making a very long trip out of the country in the spring.  The PN is worse when I can’t either be moving or have my legs up, so I was concerned about taking an extremely long flight.  It might just be best for me to be prepared with some vicodin (someone recommended this).  Once I’m there, I’ll just need a good night’s sleep to recover and all will be well.

If you have any experience with chemo-induced PN, let me know how you handle it.

Possibly Related Posts:

• Warm weather and shoeless feet
• Lingering effects of peripheral neuropathy
• Myeloma Planet – the list of every myeloma blog in the world
• Feeling “ungood”
• Latest electrophoresis, proteins and free light chains

Online support communities for high survival rate cancers contain a greater amount of emotional support content than online support communities for cancers with low survival rates, according to a new study from the U-M Health System (UMHS) and the VA Ann Arbor Healthcare System.

The researchers also found that support communities for low survival rate cancers contain a greater amount of informational support content than online support communities for high survival rate cancers.

“Online communities have become an important resource for individuals seeking emotional and informational social support related to cancer,” says senior author Dr. Caroline Richardson, assistant professor in the Department of Family Medicine at UMHS.

The study — led by Lorraine Buis, a postdoctoral research fellow at the VA Ann Arbor Healthcare System — assessed differences in emotional and informational social support content in online communities for cancers with high and low survival rates.

The researchers also found that, overall, emotional support was more prevalent than informational support across all communities and all types of cancers.

Both emotional and informational support widely is available within online communities for cancer, but not all of these sites are created equally, Buis says.

“When primary care providers refer individuals to online communities for support, they should be aware that there might be differing amounts of support based on the survival rare of a particular cancer,” she says. Buis also explains that not only are such online communities for patients, “but they help family and friends cope with the struggles that cancer presents.”

Until Richardson’s and Buis’s most recent study, there had been no previous research on the influence of patients’ cancer survival rates on social support content within online support communities for cancer.

Participants in this study all were reviewed under the same time period, were online community members who participated in online support communities for four different types of cancer — lung cancer, pancreatic cancer, thyroid cancer and melanoma — and participated in eight different online communities in the investigation.

The study was presented last week at the annual meeting of the North American Primary Care Research Group. In addition to Buis and Richardson, Pamela Whitten of Michigan State University also was an author of the study.

http://www.ur.umich.edu/0809/Nov24_08/25.php?print

Possibly Related Posts:

• Warm weather and shoeless feet
• Lingering effects of peripheral neuropathy
• The White House
• Feeling “ungood”
• Latest electrophoresis, proteins and free light chains

Multiple myeloma flame shaped plasma cell (UVA photo)

Gene Variants Can Predict Early or Late Mortality in Multiple Myeloma
Elsevier Global Medical News. 2008 Nov 11, MG Sullivan

Genetic variants in the DNA of patients with multiple myeloma appear to strongly influence survival, a groundbreaking new genomic study has concluded.

In this first pass at identifying genetic markers for survival, treatment response, and complications in the disease, a group of 3,400 variants predicted early or late mortality 76% of the time, Dr. Brian Van Ness said in an interview about the initial report (BMC Medicine 2008 Sept. 8 [doi: 10.1186/1741-7015-6-26]).

“Clearly, inherited genetics influenced survival,” said Dr. Van Ness
of the University of Minnesota, Minneapolis. “What we have not yet done is identify which specific variants are responsible for these differences. Our hypothesis is that it won’t be a single variant driving response or survival, but a complex interaction of many.”

After narrowing down the initial 3,404 candidate single nucleotide polymorphisms (SNPs), Dr. Van Ness and his colleagues are now focusing on 1,000 SNPs found to be most strongly associated with the outcome
measures. More studies are on the way using this genetic panel, he said.

Indeed, just 2 weeks after the first study appeared, a coinvestigator, Dr. Gareth Morgan of London’s Royal Marsden Hospital, published findings on the association between certain SNPs and the incidence of
treatment-associated venous thromboembolism (VTE). The analysis showed that some of the variants associated with thalidomide-related VTE occurred in pathways important in drug transport and metabolism.

“The effects of the SNPs associated with thalidomide-related VTE may be functional at the level of the tumor cell, the tumor-related microenvironment, and the endothelium,” Dr. Morgan and his colleagues wrote (Blood 2008 Sept. 19 [Epub ahead of print]).

“Another study, currently submitted, has identified an association between some of the variants and the development of severe myeloma bone disease,” Dr. Van Ness said.

The initial investigation used a genetic screen developed from two DNA data sets: cells from the Coriell Institute for Medical Research, and samples obtained from multiple myeloma patients enrolled in two
randomized drug trials, as well as some unaffected spouses. The samples came from white, black, Hispanic, and Asian patients from North America and Europe. The candidate SNPs, occurring on 983 genes, were chosen based on the most recent genetic research and included on a myeloma-specific gene-testing chip.

The investigators chose extremes of survival as the first test of the panel, because this comparison was most likely to show the effects of any genetic variant. “We took the worst outcomes – people who died in
the first year of their disease – and the best outcomes – those who survived at least 3 years without progression,” Dr. Van Ness said. After repeatedly running the screen on both data sets, the team concluded that, as a whole, it discriminated the survival groups correctly 76% of the time.

Further drilling down identified several SNPs of particular interest, including some associated with drug metabolism, transport, and export; a variant that induces myeloma apoptosis; one associated with cellular
migration and angiogenesis; and several linked to proliferative responses.

Although not designed to detect racial differences, the initial screen did identify some interesting variations: 401 of the SNP variants occurred only in black patients. In whites, there was no difference in these SNPs between cases and controls.

“We know that African Americans have a two- to threefold increase in the incidence of myeloma, but we don’t yet know why,” Dr. Van Ness said. “We’ll be trying to identify those genetic variants that might uniquely increase the risk for one race to develop myeloma over another.”

Neither this initial analysis nor subsequent ones will examine the possible interplay of environment with genetics. But, Dr. Van Ness said, such studies may be forthcoming. The International Myeloma Foundation of North Hollywood, Calif., is conducting a patient survey to begin assessing what role – if any – environmental exposure plays in disease development. The 36-page survey asks patients to detail their environmental, dietary, and geographical exposures. The National Cancer Institute will collaborate with the group in evaluating the data.

The International Myeloma Foundation is also the curator of the DNA samples used in the analysis through its Bank on a Cure program. “Bank on a Cure was developed by an international group of physicians and scientists to deal with a disease that’s difficult to deal with,” Dr. Van Ness said. “It’s not a high-incidence cancer, so it’s not easy to research.”

The Bank on a Cure group developed cooperative agreements with national and international clinical trial groups, and the studies were funded by the International Myeloma Foundation. While exploration of genetic variants relevant to multiple myeloma is in its infancy, Dr. Van Ness predicted the effect could be profound.

“It’s already fairly well established that the genetics of the tumor cells themselves impact response and survival,” he said. “But beyond this is the impact of every individual patient’s genetics – how they absorb, distribute, metabolize, and export drugs, even what race they are. If we understand why someone doesn’t respond to a drug, we could better target their therapy. If we could predict which patient might develop a life-threatening blood clot during treatment, we could take steps to prevent it.”
Copyright © 2008 International Medical News Group

Source: http://www.oncologystat.com/news-and-viewpoints/news/Gene_Variants_Can_Predict_Early_or_Late_Mortality_in_Multiple_Myeloma_US.html

Possibly Related Posts:

• Warm weather and shoeless feet
• Lingering effects of peripheral neuropathy
• Myeloma Planet – the list of every myeloma blog in the world
• Feeling “ungood”
• Latest electrophoresis, proteins and free light chains

None of the WriterHouse members wrote this article! They would have used a spell checker. Actually, they wouldn’t need to use a spell checker.  Some of them are competitors in the area’s annual spelling contest to raise money for literacy.

You can visit their web site at http://writerhouse.org.

The mission of WriterHouse is to promote the creation and appreciation of literature and to encourage the development of writers of all levels by providing affordable, secure workspace and meeting space, high quality writing instruction, and literary events for the public.

Possibly Related Posts:

• The White House
• MRIs and Mutliple Myeloma and gadolinium, oh my!
• Required reading
• Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data
• Pilot Mountain astronomy observation Saturday Night

Hannah pays us a visit

The big storm Hannah is passing through. We’re not expecting much more than 35 mph gusts and lots of rain. I forgot to bring in the stuff from the yard that would be blown away, so I won’t be surprised when I have to walk around the yard to gather it all up to put away. I’m hoping we won’t lose power. If it happens, I’ll be able to go to work, where there’s a generator.  Or, I could take a nap.

Possibly Related Posts:

• It feels like winter’s over
• The White House
• Modern dentistry
• MRIs and Mutliple Myeloma and gadolinium, oh my!
• Required reading