Researchers at Boston Children’s Hospital Seek to Explore FD/MAS and Pain in Adults
We’re taking a moment to highlight some fibrous dysplasia, McCune-Albright syndrome (FD/MAS) research that is currently recruiting participants. It’s especially exciting to see this research continue after years of collaboration through the FD/MAS Patient Registry and with the support of grants such as Team FD/MAS‘s Million Dollar Bike Ride funding. This study is exemplary of how a strong, engaged rare disease advocacy organization can open pathways for progress in rare disease research.
Researchers at Boston Children’s Hospital Seek to Explore FD/MAS and Pain in Adults
Researchers are trying to recruit study participants for a research study that aims to understand the benefit of a biopsychosocial treatment approach for pain in Fibrous Dysplasia/McCune Albright Syndrome (FD/MAS) patients. Adults ages 18 to 50 years diagnosed with FD or MAS, can participate in the research study. Participants will be asked to come to Boston for two day visits at three points during the study. Participants will be asked to come to Boston for as many as three study visits. They will receive travel reimbursement of up to $2,000 per visit and compensation of $350 per visit.
Inclusion criteria (FD/MAS Patients).
(i) 18-50 years of age
(ii) Male or female
(iii) Patients with confirmed diagnosis of FD or MAS via genetic testing, clinical assessment, or imaging
(iv) No treatment with an investigational product
(v) Physician determination that patient is safe to undergo study procedures (Dr. Sethna, Dr. Mannstadt)
(vi) Ability to provide informed consent
Exclusion Criteria (FD/MAS Patients).
(i) Active substance misuse (ETOH, opioids, sedatives, this does not include cannabis), not currently in treatment
(ii) Significant cognitive deficits that would limit ability to engage in therapy
(iii) Severe psychopathology including active suicidal ideation, self-injurious behavior or psychosis, active eating disorder, inability to maintain weight or hydration,
(iv) Certain presentations of functional neurologic disorders that would limit ability to provide effective care, safe treatment including: active seizures, or non-epileptic seizures uncontrolled fainting, episodes of unconsciousness
(v) Presence of craniofacial or upper spine metal implants.
For more information, please contact the research group at jaymin.upadhyay@childrens.