| Menopause |
How do perimenopause and menopause affect disease activity, course, response to disease-modifying treatment and quality of life in MS? How does MS affect the experience of menopause (e.g., symptoms, severity)? Do MS disease-modifying therapies or symptomatic therapies alter ovarian function, or the symptoms or timing of menopause? Are there potential treatments for menopause symptoms that can also help with MS symptoms (e.g., oxybutynin for night sweats and bladder dysfunction)? What is the impact of hormone replacement therapy on disease activity, course, and progression in MS? How effective and how safe are hormonal therapies for menopause in women with MS? What is the symptom overlap between menopause and MS, and is the management different? How can people with MS prepare for/ plan for menopause? What, if any, is the difference in induced menopause vs. natural menopause on MS disease activity? What is the impact of heat intolerance on the experience of hot flashes? What is the role, safety and effectiveness of complementary approaches/supplements to address menopause/menopausal symptoms?
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| Sex hormones |
Are there hormone related/hormone altering treatments that can stabilize fluctuations in MS symptoms? What is the optimal contraceptive strategy for women with MS? What impact do medications used to manage MS have on hormones? What is the role of estrogen, progesterone and other hormones in the risk of MS, risk of disease activity, progression and fatigue? How can education and resources be provided to women with MS surrounding impacts of hormone changes in MS? Do hormone levels affect response to disease-modifying therapy? How could diet or vitamin D affect the menstrual cycle, and how might that in turn affect MS? How can we differentiate MS symptoms and symptoms of hormone abnormalities? How does puberty affect MS risk, or risk of increased disease activity? Are there differences in menstrual symptoms for women with MS? Does menstruation worsen MS, cause pseudorelapses, or cause symptom worsening? Is pre-menstrual dysphoric disorder (PMDD) more common or worse in women with MS, and does this differ by age group? What is known about progesterone hypersensitivity in people with MS? Does the gender of the physician affect how hormone issues in MS are handled? Is there an association between severity of menstrual symptoms and subsequent development of MS? Do transgender individuals who take sex hormones to align their body with their gender alter their risk of developing MS or their course of MS?
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| Sexual dysfunction |
What are the most effective strategies for managing issues around sexual intimacy, including related to low sexual desire, changes in physical function, and MS symptoms? What role do pelvic pain, pelvic floor spasticity, and pelvic floor physiotherapy play in sexual dysfunction in MS? How common is sexual dysfunction in MS and what are the risk factors including changes on MRI? What are the information and knowledge needs of providers to support sexual intimacy for persons with MS, and when in the disease is the best time to have discussions around sexual dysfunction? Are there effective preventative strategies for the development of urinary leakage or sexual dysfunction for women with MS? How can women with MS be supported in partner communication related to sexual dysfunction at different stages in an intimate relationship? What is the best way to assess sexual dysfunction in MS? How can sexual dysfunction from MS versus sexual dysfunction from medications used to treat MS, MS symptoms and menopause be disentangled? Why do MS symptoms change during sexual activity, how much of it is due to heat? What is the best way to give partners of women with MS information and support around sexual dysfunction in MS? How can we normalize discussion around women? How often do women with MS and health care providers talk about sexual dysfunction? How often are women with MS referred to sex therapists and how can sex therapists be integrated in MS care?
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| Pregnancy |
Are there long-term effects of disease-modifying therapies on the children of persons with MS? How do MS and disease-modifying therapies affect the ability to become pregnant, the course of the pregnancy, labor and lactation? What factors do women with MS consider when making decisions surrounding pregnancy and how can they be supported in making those decisions? What is the best treatment strategy in women with highly active disease planning a pregnancy? Which disease-modifying and symptomatic therapies are safe during pregnancy and breastfeeding? What underlying disease process or treatment factors influence the effects of pregnancy and breastfeeding on MS, and the risk of post-partum relapse? How can pregnancy/ post-partum fatigue be managed for persons with MS? How does birth control affect people with MS? How does pregnancy affect symptoms of MS? Are women with MS more likely to need IVF/assistive reproductive technologies, how does IVF impact persons with MS, and what information about IVF can be provided to support decision-making? What is the optimal time period to breastfeed post-partum before starting a disease-modifying therapy? What is the knowledge base globally among obstetricians/mid-wives of fetal risk of disease-modifying therapies and common symptomatic medications used for MS? How does the experience of pregnancy in women with MS compare to that of women without MS? What is the interplay between stopping birth control in conjunction with stopping disease-modifying therapy for pregnancy? Does pregnancy affect the rate of being diagnosed with MS in people with radiologically isolated syndrome or clinically isolated syndrome (first attack)? Are there diagnostic delays for pregnant/post-partum individuals presenting with MS? What are the challenges in positioning for pregnancy visits and the birth and how can these be adapted?
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| Parenthood |
How does MS fatigue impact parenting strategies? How does the health of a parent with MS affect their children? What communication strategies or programs can be designed for children or grandchildren of persons of MS to help them understand the disease and provide support to these individuals? What information and support do people with MS need to be supported in decision-making surrounding becoming parents, preparing to manage parenthood and planning ahead for the future? How can we predict the risk of a child of someone with MS, and how can we reduce the risk? How does MS in general affect parenting (e.g., teaching kids skills on a different timeline)? What are the system level resources needed for persons with MS to support parenthood, including single parenthood? What are strategies that could be effectively used to increase confidence/safety of caring for children/grandchildren/nieces/nephews for persons with MS (strategies to address fatigue, balance, mobility, strength and other symptoms)? What are approaches that can help women with MS experiencing guilt, shame, or grief around issues related to motherly roles? What differences are there in concerns/worries about parenting and children for persons with MS? What are effective communication strategies in discussing parenthood concerns for persons with MS with their provider and with their family? In what ways to do the current parenting culture align/misalign with caring for yourself as women with MS?
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| Gynecological cancer and screening |
What are the short and long-term effects of disease-modifying drugs on gynecologic cancer risk, particularly for high efficacy disease-modifying drugs and hematopoietic stem cell therapy? What disease-modifying therapies should be used in patients with active gynecologic cancer? How often should cancer screening be done for women using disease-modifying therapies and how long should this continue after stopping disease-modifying therapies? What access barriers are there for persons with MS to getting cancer screenings and treatment? How healthcare providers be trained to support individuals with physical disabilities as they access cancer care, and how can accessible exam tables be designed for people with MS? Are the risks and symptoms of gynecologic cancers different for women with and without MS? Is the human papillomavirus (HPV) vaccine well tolerated by women with multiple sclerosis and should they receive Gardasil vaccination against HPV? How can cancer treatments and the treatment environment be adapted to accommodate for MS symptoms including additive symptoms from cancer/treatment? What are the experiences of persons with MS undergoing gynecologic cancer, screening, and treatment? How can we educate persons with MS and their caregivers about support resources, advocacy strategies and leave options when they are dealing with cancer, screening, treatment? What are the needs/challenges of caregivers of persons with MS undergoing cancer, screening, and treatment?
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