Carers UK Survey
Carers UK is conducting a major new piece of research into the impact that caring
for ill, frail or disabled relatives can have on carers' finances, health and ability
to live their own lives. If you have had a particularly good experience and received
support that has made a real difference to you, or have had particularly bad experiences,
and would like to share it please follow the link below
Survey
How should we define who is a ‘carer’?
Are you caring for somebody with a neurological condition? If so we would like your
help. We are a team at King's College London and have been commissioned by the Department
of health to try and find a suitable definition for the terms ‘carer’ and ‘respite
care’. We would like you to complete a brief online survey to help us do this.
If you would like to take part in this survey please click here
Or for more information please contact David Williams on 020-7848-5418 or email
+12: Care Co-ordination Network UK ("CCNUK") - key working evidence.
CCNUK is gathering evidence to support the need for key working, and a big part
of that process is collecting case studies. They want to hear from parents or young
disabled person who have experienced life both without and with a key worker, and
would like to tell them what impact a key worker had in their life. Perhaps you
have never had a key worker and would like to tell your story and how you think
things could have been better with key worker support in place. Alternatively, you
may be a key worker and want to share your experience of the role, or a service
manager that could contribute a case study on how the service was established. CCNUK
would also be interested in hearing from practitioners supporting families with
disabled children, who have an anonymised case in mind where a key worker did, or
could, completely change a family’s life for the better.
If you would like to tell CCNUK your key worker story, and help support them in
proving the importance of key working for families across the UK, then please contact
them. You can send your written case study by post to CCNUK Head Office, Tower House,
Fishergate, York YO10 4UA. You can also contact the York office on 01904 567303
to arrange a time to talk through your story with their Admin team and they would
be happy to scribe this for you if that would be more convenient or by
Email David Williams.
Researchers wishing to advertise their studies on this page please
Contact US
Neonatal Herpes Simplex Virus Survey
Commencing January 2004
January 2004 will see the commencement of a survey into neonatal herpes simplex
virus. The survey is to last for 37 months and will be undertaken through the ICH
(London) centre for paediatric epidemiology and biostatistics. This study has received
ethics approval from the London MREC and is funded from departmental funds.
Surveillance of neonatal HSV was previously undertaken through the BPSU in 1986-1991.
The estimated prevalence of infection was then 1.65/100,000 (CI 1.3-2.0/100,00).
HSV-1 and HSV-2 were reported in equal proportions, but in one third of cases the
virus was not typed.
Approximately equal numbers of infants presented with localised, disseminated and
CNS infection.
Given the rarity of the condition, and the observation that most infants were born
to women with no prior history of infection, it was considered at that time that
antenatal screening was not justified.
There is evidence that the epidemiology of HSV in the British Isles may have changed.
The increasing incidence of sexually transmitted diseases, the likelihood that there
have been changes in HSV-seroprevalence because of demographic and social developments,
and the availability of improved diagnostic techniques all lend weight to an argument
for reassessing the current incidence of neonatal infection. The antenatal screening
group of the National Screening Committee has recently discussed whether antenatal
or neonatal HSV screening should be reconsidered. It is hoped that data collected
from this survey can contribute to this debate.
Surveillance case definition:
Any infant under one month
- with a diagnosis of HSV infection, based on virus culture, or serology, or PCR,
or
-
treated with antiviral drugs for suspected HSV infection
Analytic case definition:
Confirmed case of neonatal HSV:
- Virus culture, specific IgM, PCR confirming HSV infection on a specimen taken in
the first four weeks of life, or
-
Typical clinical manifestations with maternal infection confirmed by either seroconversion
or virus isolation around the time of delivery
Suspected case of neonatal HSV:
-
Typical clinical manifestations and treated with antiviral drugs for suspected HSV
infection.
Please report any live born or stillborn infant born since the beginning of 2004
in the UK or Ireland with confirmed or suspected neonatal HSV infection, seen by
you for the first time in the last month.
For further information contact
Dr Pat Tookey, Centre for Paediatric Epidemiology and Biostatistics, Institute of
Child Health, London.
Tel: 020 7242 9789,
E-mail: p.tookey@ich.ucl.ac.uk
Valacyclovir for long term therapy of Herpes simplex encephalitis
This study is currently recruiting patients.
Sponsored by National Institute of Allergy and Infectious Diseases (NIAID)
Purpose
The purpose of this study is to see if giving Valacyclovir (VACV) to patients with
herpes simplex encephalitis (HSE) can increase the survival rates of these patients
and reduce brain and nervous system damage. A sub-study will also be performed to
look at the relationship between the level of herpes virus in the blood and "long-term"
brain damage injury caused by the HSE infection.
|
Condition
|
Treatment or Intervention
|
Phase
|
|
Encephalitis, Herpes Simplex
|
Drug: Valacyclovir hydrochloride
|
Phase III
|
MedlinePlus related topics:Encephalitis; Viral Infections
Study Type: Interventional
Study Design: Treatment, Randomized, Placebo Control, Parallel
Assignment
Official Title: A Phase III Double-blind, Placebo-controlled Trial of
Long-term Therapy of Herpes Simplex Encephalitis: An Evaluation of Valacyclovir.
Further Study Details:
There are currently two main types of herpes that are known to lead to HSE. These
viruses are spread by intimate contact and/or contact with body fluids such as saliva,
blood, breast milk, or semen. People who have herpes do not always have symptoms
as the herpes virus may lay dormant in the body for long periods of time. Those
who become symptomatic will have a variety of symptoms such as fever, mouth sores,
or genital sores that may then spread into the central nervous system. If the virus
penetrates the central nervous system and enters into the spinal fluid, it may cause
headache, fever, myalgia, difficulty with speech, seizures, and, if left untreated,
can lead to brain damage, coma and even death. An infection of this nature cause
by herpes simplex is referred to as herpes simplex encephalitis (HSE). HSE is currently
treated with a drug called acyclovir (ACV). However, 20% of patients die of this
disease and 60% have long-term brain damage, even if they receive ACV. Hospitalization
for IV ACV therapy can only be anticipated for a finite time, usually 14-21 days.
Thus, a bioavailable drug capable of achieving plasma levels similar to IV ACV would
be beneficial. This study tests the therapeutic effect of adding the drug valacyclovir
(VACV), the oral pro-drug of ACV, to the current treatment with ACV. The sub-study
will look at the areas of the brain that are affected by HSE to determine if early
and long-term treatment with VACV is beneficial.
Eligibility
Ages Eligible for Study: 12 Years and above, Genders Eligible for
Study: Both
Criteria
INCLUSION CRITERIA:
You may be eligible for this study if you: are 12 years of age or older (parental/guardian
consent required if under 18); weigh at least 100 pounds;have HSE (a test of your
cerebrospinal fluid must be positive for herpes simplex virus); have completed IV
ACV therapy for a minimum of 14 days to a maximum of 21 days and a minimum dose
of 30mg per kg per day to a maximum of 60mg per kg per day; available for follow-up
visits at least for 90-days of study drug administration; agree to practice abstinence
or use effective birth control while you are taking the study medication and for
30 days after finishing study medication. Informed consent or assent must be obtained
from the patient or legal guardian.
EXCLUSION CRITERIA:
The following conditions exclude participation in this trial: Failure to detect
HSV DNA in the patient's CSF by PCR; creatinine clearance less than or equal to
50 ml/min/1.73 m (sq); have a life expectancy of less than 90 days; are unable to
swallow oral medications; are more than 3 days beyond completion of IV ACV therapy;
are not receiving or will not have completed IV ACV therapy for a minimum of 14
days to a maximum of 21 days and a minimum dose of 30 mg/kg/day to a maximum of
60 mg/kg/day; have received any anti-herpes virus medications other than ACV to
treat the current episode of HSE; expected to receive long-term (more than 30 days)
therapy with antiviral medications active against HSV; are pregnant or continue
to breast-feed; refuse to sign an informed consent.
Expected Total Enrollment: 132
Location and Contact Information
Laura Riser 1-877-975-7280 LRiser@peds.uab.edu
Alabama
University of Alabama at Birmingham (CASG), Birmingham, Alabama, 35294, United
States; Recruiting
Colorado
Denver VA Medical Center, Denver, Colorado, 80220, United States; Recruiting
Indiana
Indiana University, Indianapolis, Indiana, 46202, United
States; Recruiting
Kansas
Kansas City Cancer Centers, Kansas City, Kansas, 66112, United
States; Recruiting
Via Christi Regional Medical Center, Wichita, Kansas, 67203, United
States; Recruiting
University of Kansas, Kansas City, Kansas, 66160, United States; Recruiting
Maryland
Johns Hopkins University, Baltimore, Maryland, 21287, United
States; Recruiting
Minnesota
Mayo Clinic - Rochester MN, Rochester, Minnesota, 55905, United
States; Recruiting
Missouri
St. Louis University, St. Louis, Missouri, 63104, United
States; Recruiting
New Mexico
University of New Mexico - Albuquerque, Albuquerque, New Mexico,
87106, United States; Recruiting
New York
State University of New York at Stony Brook, Stony Brook, New York, 11794, United
States; Recruiting
Columbia University, New York Presbyterian Hospital, New York, New York, 10032,
United States; Recruiting
Pennsylvania
Thomas Jefferson University, Philadelphia, Pennsylvania, 19107, United
States; Recruiting
Texas
University of Texas - Houston, Houston, Texas, 77030, United
States; Recruiting
Canada , Alberta
University of Alberta, Edmonton, Alberta , T6G2B7, Canada; Recruiting
Canada , Manitoba
University of Manitoba, Winnipeg, Manitoba, R3EOW3, Canada; Recruiting
Canada , Ontario
Kingston General Hospital, Kingston, Ontario, K7L2V7, Canada; Recruiting
Sweden
Gothenberg University, Gothenberg, Sweden; Recruiting
Uppsala University Medical School, Uppsala, Sweden; Recruiting
Umea University, Umea, Sweden; Recruiting
Lund University, Lund, Sweden; Recruiting
Karolinska University, Stockholm, Sweden;Recruiting
United Kingdom
Royal Free & Univ. College Medical School, London, NW32PF, United
Kingdom; Recruiting
More Information
Study ID Numbers 98-022
Study Start Date January 2000
Record last reviewed December 2003
NLM Identifier NCT00031486
ClinicalTrials.gov processed this record on 2004-02-12
Last modified: February 2011