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Written by Administrator   
Thursday, 10 January 2008


ANNOUNCEMENT RE FORMATION OF SIRG ON DOWN SYNDROME
Many members of IASSID have interests in Down syndrome. Recently IASSID signed an agreement with Down Syndrome International regarding joint cooperation and support.
This seems an opportune moment to consider the possibility of forming a Special Interest group in this field along with the scientific and applied activities that might be appropriate.
A meeting to consider the above will take place in Maastricht at the time of the E-Iaasid conference.
Location University building UNS 40: the Tutorial Room 0th floor, 0.537
Time Friday, 4th August from 12.30-14.00 hr

If you are interested please come along.
Expressions of interest, whether you are coming to Maastricht or not would be welcome (see-mail contact below)
Roy Brown PhD
E-mail: [email protected]

DOWN SYNDROME LIFESPAN PROJECTS QUESTIONNAIRE

There is a growing interest in the aging of people with Down syndrome, as reflected in the activities of organizations such as Down Syndrome International and the International Association for the Study of Intellectual Disabilities. Given this, it appears to be an appropriate time to initiate a broad discussion of the merits and feasibility of establishing an informal international consortium on studies of adults with Down syndrome. A first step would be to assess the nature and extent of current research activity.

This questionnaire asks some pertinent questions on the state of current research activity involving persons with Down syndrome. We plan to compile this information, share it among the respondents, and then use it to help frame a discussion on forming such a consortium at the forthcoming 9th World Down Syndrome Congress to be held in Vancouver, August 23-27, 2006.

We'd appreciate your taking a few moments and answering these questions. The results will be posted on the website of the IASSID (www.iassid.org). We will also send along an email with the results.

Down Syndrome Studies Working Group


A. DEMOGRAPHICS

 

*A-1.Your name


A-2. Your highest degree

Baccalaureate
Masters
Doctorate (Ph.D. or equivalent)
Medical degree (MD or equivalent)
Other (specify, please)

*A-3. Your email address

*A-4. Your work telephone number (please provide country code)

A-5. Your work fax number (please provide country code)

*A-6. Your postal address
(please provide full address)
postal code

A-7. Your discipline or profession

B. CLINICAL & RESEARCH ACTIVITIES

B-1 Are you currently working with a clinic population of children and/or adults with Down?

Yes, children
Yes, children and adults
Yes, adults
No

B-2 Have you or any of your colleagues used this clinic population for any research studies?

Yes, I have
Yes, my colleagues have
No

B-3 Are you presently conducting any research involving persons with Down syndrome?

Yes
No

B-3a If YES, is your research involving persons with Down syndrome who are:

children
adults
both

B-4 What is the nature of your research project(s)? (Check all that apply)

Behavioral
Biological
Educational
Epidemiological
Genetic
Medical
Pharmacological
Psychiatric
Psychological
Social
Family
Other (please specify)

B-5 Are you conducting any longitudinal follow-ups of your study participants?

Yes
No

B-6 How long has your study (ies) been ongoing?

Just started
Less than 1 year
1 to 2 years
2 to 5 years
More than 5 years

B-7 In which country (ies) are you conducting the research?

B-8 How many participants are there in your study?

B-9 How many of the participants in your research do NOT have Down syndrome?

B-10 Of the participants in your study, what is their
mean age
age range

B-11 Where are your study participants with Down syndrome living:

at home with family
alone or with flatmates
group home setting
institution
hospital
other (please specify)

B-12 If you are working on a funded study, for how many more years is the study funded?


C. INTERNATIONAL STUDIES

C-1 Would you be interested in joining an international study consortium, if one was formed?

Yes
No

C-2 Would you like to be kept on the distribution list of this working group's efforts?

Yes
No

C-3 What type of areas would like to see an international consortium study?



C-4 Would be willing to participate in an international study that was submitted to the US National Institutes of Health for funding?

Yes
No

C-5 Do you permit us to list your project on the IASSID website?

Yes
No

Thanks for completing this survey
 
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