Jonah's Just Begun/ODDT poster for WORLD 2013
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What is Sanfilippo disease type C? Mucopolysaccharidosis Type IIIC (MPS IIIC or Sanfilippo disease type C) is one such LSD that is caused by deficiency of enzyme heparan sulfate acetyl CoA: a-glucosaminide N-acetyltransferase, (HGSNAT) responsible for degradation of heparan sulfate, a repeating carbohydrate generally found attached to proteoglycans. The clinical phenotype includes onset in infancy or early childhood, progressive and severe neurological deterioration causing hyperactivity, sleep disorders and loss of speech accompanied by behavioral abnormalities, neuropsychiatric problems, mental retardation, hearing loss, and visceral manifestations, such as mild hepatomegaly, joint stiffness, vertebral bodies and hypertrichosis. There is no treatment but there are research efforts to find one funded primarily by multiple MPSIIIC disease foundations. The number of patients and research community engaged are both small. The amount of research funding available is limited so any efforts to raise awareness of this disease are key. Raising Awareness of the Rare Disease Sanfilippo Syndrome C Using The Open Drug Discovery Teams (ODDT) Mobile App Sean Ekins1 , Alex M. Clark2 and Jill Wood3 1 Collaborations in Chemistry, 5616 Hilltop Needmore Road, Fuquay Varina, NC 27526, U.S.A., 2 Molecular Materials Informatics, 1900 St. Jacques #302, Montreal, Quebec, Canada H3J 2S1., 3Jonah's Just Begun, P.O. Box 150057, Brooklyn, NY 11215, USA B http://collabchem.com @jonahsjustbegun and @collabchem tweets with #sanfilipposyndrome Content collected ready for viewing Raise awareness of clinical studies Raise awareness of children with disease The App Items that are endorsed are saved to content tab Highlight and link to important published papers Share molecules and ideas for drug repurposing Links to other databases Information on rare disease advocacy Highlight availability and cost of treatments for rare diseases Content collected ready for viewing Content from web Get ODDT here support it! We now present the Open Drug Discovery Teams (ODDT) project which uses a free iOS mobile app as user entry point http://tinyurl.com/ato62ko . The app has a magazine-like interface, and server-side infrastructure for hosting chemistry-related data as well as value added services. The project is open to participation from anyone and provides the ability for users to make annotations and assertions, thereby contributing to the collective value of the data to the engaged community. The infrastructure for the app is currently based upon the Twitter API and uses Google Alerts RSS feeds as a useful proof of concept for a real time source of publicly generated content. We now highlight how ODDT can be used to raise awareness of Sanfilippo syndrome and engage this disease community by following #sanfilipposyndrome using Twitter and Google Alerts. Reference Ekins S, Clark AM and Williams AJ, Open Drug Discovery Teams: A Chemistry Mobile App for Collaboration, Mol Informatics, Aug;31(8):585-597, 2012
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Transcript of Jonah's Just Begun/ODDT poster for WORLD 2013
What is Sanfilippo disease type C?Mucopolysaccharidosis Type IIIC (MPS IIIC or Sanfilippo disease type C) is one such LSD that iscaused by deficiency of enzyme heparan sulfate acetyl CoA: a-glucosaminide N-acetyltransferase,(HGSNAT) responsible for degradation of heparan sulfate, a repeating carbohydrate generallyfound attached to proteoglycans. The clinical phenotype includes onset in infancy or earlychildhood, progressive and severe neurological deterioration causing hyperactivity, sleep disordersand loss of speech accompanied by behavioral abnormalities, neuropsychiatric problems, mentalretardation, hearing loss, and visceral manifestations, such as mild hepatomegaly, joint stiffness,vertebral bodies and hypertrichosis.
There is no treatment but there are research efforts to find one funded primarily bymultiple MPSIIIC disease foundations. The number of patients and research communityengaged are both small. The amount of research funding available is limited so any effortsto raise awareness of this disease are key.
Raising Awareness of the Rare Disease Sanfilippo Syndrome C Using The Open Drug Discovery Teams (ODDT) Mobile App
Sean Ekins1 , Alex M. Clark2 and Jill Wood3
1 Collaborations in Chemistry, 5616 Hilltop Needmore Road, Fuquay Varina, NC 27526, U.S.A., 2 Molecular Materials Informatics, 1900 St. Jacques #302, Montreal, Quebec,Canada H3J 2S1., 3Jonah's Just Begun, P.O. Box 150057, Brooklyn, NY 11215, USA
B
http://collabchem.com
@jonahsjustbegunand @collabchem tweets with#sanfilipposyndrome Content collected ready
for viewing
Raise awareness ofclinical studies
Raise awareness ofchildren with disease
The App
Items that areendorsed are
saved to contenttab
Highlight and link toimportant published
papers
Share molecules andideas for drug repurposing
Links to other databases
Information on raredisease advocacy
Highlight availability and cost oftreatments for rare diseases
Content collected readyfor viewing
Content from web
Get ODDT here support it!
We now present the Open Drug Discovery Teams (ODDT) project which uses a free iOS mobileapp as user entry point http://tinyurl.com/ato62ko . The app has a magazine-like interface, andserver-side infrastructure for hosting chemistry-related data as well as value added services. Theproject is open to participation from anyone and provides the ability for users to make annotations andassertions, thereby contributing to the collective value of the data to the engaged community. Theinfrastructure for the app is currently based upon the Twitter API and uses Google Alerts RSS feeds asa useful proof of concept for a real time source of publicly generated content.We now highlight how ODDT can be used to raise awareness of Sanfilippo syndrome andengage this disease community by following #sanfilipposyndrome using Twitter and GoogleAlerts. ReferenceEkins S, Clark AM and Williams AJ, Open Drug Discovery Teams: A Chemistry Mobile App for Collaboration, MolInformatics, Aug;31(8):585-597, 2012
