Clinical data is avaiable from the evaluation of 200+ genetically confirmed dysferlinopathy patients. The evaluations took place over 7 visits spanning 3-5 years. The 7 visits start with a baseline visit and then proceed at 6 months, 1 year, 2 years, 3 years, 4 years and 5 years.
The Clinical Data includes the medical, physiotherapy, laboratory, MRI, patient questionnaires and patient reported outcome measures (PROMS) that were performed on each participant during COS, according to their level of ability.
To request clinical data or to learn more:
We can help you determine the most appropriate clinical data for your research needs. Email the Jain Foundation at admin@jain-foundation.org with the following information:
-What research questions are you trying to answer?
-What clinical data do you need? (types of data listed above)
– From how many patients do you need data? (There were 200+ patients total in the study)
-How many visits per patient are needed? (visits are described above)
-Do you want correlated human biospecimens with your request?